The photo in the center of the gallery is the most recent addition: Chuc\u2019s mother, Francisca Violeta Sam Colop, who died in July 2025 after a long journey with skin cancer. In the photo, Sam Colop, an Indigenous Maya K\u2019iche\u2019 educator from the Guatemalan highlands, is smiling widely, sitting with crossed arms, wearing a traditional handwoven blouse, or huipil, with blue, green and purple embroidery.<\/p>\n
\u201cThere is always the fear that [cancer] might strike me, strike one of us next,\u201d Chuc said. \u201cThere is so much you can\u2019t control.\u201d<\/p>\n
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\n\tA portrait of Francisca Violeta Sam Colop hangs among photos of her relatives in her family home. Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n
One night in 2012, Chuc said, Sam Colop noticed a stubborn dark spot on her right foot. She shrugged it off, telling her daughter it was a mole. But a dermatologist diagnosed her with melanoma. For the next nine years, Sam Colop was in and out of hospitals, undergoing surgeries and enduring round after round of chemotherapy. Still, the tumors kept spreading.<\/p>\n
In 2021, she visited one of the country\u2019s top oncologists, who prescribed what he considered to be the most effective treatment: pembrolizumab, an intravenous immunotherapy drug known as Keytruda. After its approval by the U.S. Food and Drug Administration in 2014, Keytruda began selling in the United States, Europe and Japan but was less available in developing countries like Guatemala.<\/p>\n
Sam Colop would need regular infusions, and each cost nearly $11,000. \u201cThe whole treatment costs millions of quetzals [hundreds of thousands of U.S. dollars]. It would be impossible to afford,\u201d Sam Colop\u2019s husband, Juan Chuc Xum, recalled one doctor saying.<\/p>\n
Sam Colop had to fight to get the medication, eventually taking her country\u2019s publicly run health insurance system to court. By then, she\u2019d been living with cancer for over a decade.<\/p>\n
\u201cCould [Keytruda] have saved my mother\u2019s life?\u201d Chuc wonders. \u201cI think it would have. I also believe it was too late when she got it.\u201d<\/p>\n
![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/Quetzaltenango_Cancer-2-760x427.jpg\")
\n Juan Chuc Xum (center) with his daughters Marina Chuc Sam (left) and Violeta Chuc Sam (right). Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n
Sam Colop\u2019s case is similar to that of thousands of patients around the world \u2014 particularly those in developing countries \u2014 who have taken on draining bureaucratic battles with public and private insurers to access Keytruda, which can cost anywhere from about $29,000 in Indonesia to $130,000 in Colombia, to $208,000 in the United States for a year of treatment. In developing countries, the drug is rarely included on the national lists of essential medicines, which governments rely on to decide what public and private insurers must cover. As a consequence, insurers in some low- and middle-income countries largely avoid covering the drug unless a court or regulator forces them to. Some cancer patients have died while waiting for health systems to comply with court decisions. Others have paid thousands of dollars out of pocket before their insurers complied with courts\u2019 or regulators\u2019 orders.<\/p>\n
In South Africa, one of the only countries in sub-Saharan Africa where Keytruda is readily available, a small-business owner who has lung cancer can\u2019t get her private insurer to fully comply with a landmark ruling by the national regulator to cover Keytruda. In Guatemala and elsewhere in Latin America, patients like Sam Colop have taken to courts to force their insurers or public health systems to provide the drug. Patients in wealthier countries struggle for access, too: In the United States, a CEO of a medical consulting firm went without treatment for many weeks while fighting a denial of coverage of the drug.<\/p>\n
Many high-cost drugs trigger court battles. But Keytruda \u2014 which has made around $163 billion in revenue for Merck & Co. since its launch more than a decade ago \u2014 is one of the starkest symbols of a dysfunctional global system that disproportionately hurts poorer countries with limited health care budgets and little negotiating power with Big Pharma.<\/p>\n
![\"Photo](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/Quetzaltenango_Cancer-patients-treatment-Plaza-Publica-760x427.jpg\")
\n Cancer patients receiving treatment at a clinic in Quetzaltenango. Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n
These findings are part of the Cancer Calculus<\/a>, an investigation by ICIJ and 47 media partners that examines the reasons for Keytruda\u2019s exorbitant prices \u2014 and exposes the global consequences.<\/p>\n Speaking in part to those consequences, Merck told ICIJ: \u201cWe operate in compliance with the applicable laws, and regulations, and do not support, promote, or engage in any activities intended to encourage legal claims. While legal claims are a lawful administrative pathway for some patients to access medicines, we believe they are not a sustainable approach, since it may be an inefficient use of government budgets, and do not consistently enable timely, predictable, and broad patient access.\u201d<\/p>\n The company said that the development of Keytruda \u201cis now one of the largest and costliest pharmaceutical [research and development] programs ever undertaken.\u201d<\/p>\n Merck also said: \u201cWe have a long history of responsibly pricing our medicines to reflect their value to patients, payers and society. To ensure our products reach as many patients as possible, we price them differentially across markets, and sometimes within markets, according to numerous factors. These factors include the value a therapy brings to patients and the healthcare system, countries\u2019 pricing and reimbursement systems and the ability of governments to finance healthcare.\u201d<\/p>\n But, as Daniel W.L. Wang, a law professor at the Funda\u00e7\u00e3o Get\u00falio Vargas in Sao Paulo whose research focuses on health-related litigation in Latin America, explained to ICIJ: \u201cMany of these countries are middle- or low-middle-income countries, and they struggle to universalize even the most basic health services. So the claims for pembrolizumab put a lot of pressure on their health budget.\u201d<\/p>\n \u201cEven if we improve the funding for our health system, even if we improve our policies, this is still a cost challenge,\u201d he added, \u201cbecause the cost of the treatments grows at a pace that the health systems budgets cannot keep up.\u201d<\/p>\n As a result, a sky-high price of a potentially lifesaving cancer drug puts it out of reach for many health systems, forcing patients who have the resources \u2014 and stamina \u2014 to fight for the right to treat their disease. When this happens, access to pricey drugs can become less about medical need and scientific evidence and more about whose lives are worth saving.<\/p>\n \u2018The judicialization of health care\u2019<\/p>\n By the time Sam Colop was diagnosed in 2012, her family had moved from a modest home on the outskirts of Quetzaltenango to a nicer two-story house near the town\u2019s center, a sign of upward mobility seldom achieved by Mayan families. Sam Colop worked as a teacher, then principal of a bilingual Spanish and K\u2019iche\u2019 school, and as a college lecturer, allowing her to access Guatemala\u2019s publicly administered insurance program, the Instituto Guatemalteco de Seguridad Social (the Social Security Institute), known locally as IGSS.<\/p>\n The IGSS is funded by mandatory payroll deductions and covers more than 3.3 million people. To receive care, beneficiaries must use designated IGSS hospitals and doctors. Patients who require faster, specialized care usually seek out private hospitals, paying out of pocket or with supplemental insurance.<\/p>\n Over the years, Sam Colop underwent more than 30 surgeries in private hospitals, paid for with her salary and by selling her car and the piece of land her parents left her, Chuc said. For chemotherapy and targeted therapy treatments, she\u2019d endure a grueling four-hour bus ride along the winding highway that connects Quetzaltenango with the capital, Guatemala City, to receive her medication at the IGSS hospital.<\/p>\n \u201cI remember one time she had to go to Guatemala City for her treatment and she didn\u2019t have the bus fare,\u201d Chuc said. \u201cA group from church came and gave her an envelope with a donation.\u201d<\/p>\n Eventually, Sam Colop sought a second medical opinion from Eduardo Gharzouzi, an oncologist outside the IGSS system. A genetic test indicated she\u2019d be a good candidate for Keytruda, Gharzouzi told ICIJ partner Plaza P\u00fablica.<\/p>\n But when Sam Colop requested that IGSS provide the medication, she didn\u2019t get an answer. (IGSS has never included Keytruda on its official list of covered medications, and there are no biosimilars for Keytruda on the IGSS list.)<\/p>\n Out of options, the family paid a lawyer about $1,300 to file an amparo. This distinctively Latin American legal remedy, similar to an injunction, protects constitutional rights \u2014 like health and life \u2014 from abuses by the state and, sometimes, private entities. It was implemented in Mexico<\/a> in 1857 and inspired many other Latin American countries to adopt similar protections, under the name amparo or tutela. Each country has its own rules about who can use the injunctions and which rights they protect.<\/p>\n \u201cThe amparo is the right of every person to appeal to a court in the face of an arbitrary act or the violation of another right,\u201d Jord\u00e1n Rodas, a lawyer and former human rights ombudsman in Guatemala, told ICIJ. \u201cIdeally, however, people wouldn\u2019t have to resort to legal protection to guarantee their health care.\u201d<\/p>\n Access to costly health care is a common reason to file amparos, with patients asking judges to force insurers and public hospitals to provide expensive medication and treatment. While amparos or tutelas are the go-to legal mechanism to seek access to expensive medication in many South and Central American countries, in Brazil most patients file regular lawsuits, explained Wang. Fewer patients seek the treatments through mandados de seguran\u00e7a, Brazil\u2019s version of the amparo, he added.<\/p>\n Wang<\/a> and researchers who have analyzed the phenomenon in Brazil and other South American countries, including Wang<\/a>, have dubbed it \u201cthe judicialization of health care.\u201d<\/p>\n \u201cThe courts in Central and South America treat the right to health as an absolute individual right,\u201d Wang said. \u201cSo as long as you can show that you need the treatment, no matter the impact on the health system, no matter the impact on the other users of the health system, you have the right to receive it.\u201d<\/p>\n Data analyzed by ICIJ shows that health and legal systems are increasingly intertwined in some Latin American countries, where Keytruda is often accessed through a court order. In Guatemala, from December 2022 to February 2026, the Constitutional Court \u2014 Guatemala\u2019s highest court for constitutional matters \u2014 examined 96 amparo petitions for Keytruda coverage; all but one were granted.<\/p>\n In Brazil, federal and state courts have examined around 4,300 judicial requests for pembrolizumab since 2019; the majority ruled in favor of patients. In Mexico, ICIJ partner Quinto Elemento Lab found 55 amparos filed from October 2017 to February 2026. Thirty-six of those granted access to Keytruda, and eight were dismissed because the drug was provided to the patients before the courts had to decide. And in Chile, courts sided with patients in 10 of a dozen cases.<\/p>\n Nearly all of the amparo petitions in Guatemala were filed by IGSS beneficiaries. The IGSS has provided Keytruda to patients since at least 2018 \u2014 but generally after being forced by courts, public records show.<\/p>\n In a statement to ICIJ<\/a>, IGSS said that high-cost medications \u201care administered under technical and medical protocols designed to balance timely access, available scientific evidence, and the sustainability of the system.\u201d<\/p>\n \u201cIn this context, the IGSS has allocated significant resources to provide these types of treatments, amounting to approximately 1,703 million quetzals [more than $218 million] \u2014 a figure that reflects the growing demand and the progressive incorporation of specialized therapies,\u201d the statement said. \u201cThe institution implements evaluation processes for the inclusion of new treatments, prioritizing patient safety, therapeutic efficacy, and the rational use of public resources.\u201d<\/p>\n Sam Colop\u2019s amparo petition argued that her IGSS-sanctioned treatments \u2014 chemo and targeted therapies \u2014 hadn\u2019t stopped her disease\u2019s progression. In May 2021, a court ruled in her favor, and she began receiving Keytruda. IGSS appealed the decision, arguing that it hadn\u2019t denied Sam Colop comprehensive medical care and raising concerns about more than 30 possible side effects of Keytruda.<\/p>\n In court records reviewed by ICIJ, the public insurer said in its appeal that it had \u201cno legal obligation\u201d to buy specific commercial brands. According to IGSS\u2019 arguments, the judges were overreaching by making decisions that should be left to \u201cmedical professionals within the scientific sphere of medicine.\u201d<\/p>\n The case reached the Constitutional Court, which sided with Sam Colop in September 2021, four months after the original court decision in her favor. The ruling ordered IGSS to continue to provide the medication as prescribed and ensure there is no shortage of the drug.<\/p>\n For two years, Sam Colop received Keytruda when it was available. Medical supply shortages are common in Guatemala and other Central American countries due to underfunding of health systems and a high reliance on imported medication. Chuc recalled several times when Sam Colop traveled to the capital to receive her infusions, only to find out there was no medication. During these shortages, she\u2019d go back to chemotherapy or miss treatment altogether.<\/p>\n The IGSS said in its statement that it \u201coperates under principles of equity, legality, and transparency, utilizing internal procedures that allow for the review of clinical cases and the processing of requests in accordance with medical and administrative criteria.\u201d Regarding judicial rulings, IGSS said, \u201cin cases where a final judicial ruling mandates the provision of a specific medication or treatment, the institution is required to comply faithfully and strictly with said mandate.\u201d<\/p>\n By 2024, Sam Colop was in a wheelchair. The cancerous tumor on her right foot had become a deep, open sore, and her cartilage was nearly exposed. That April, though, she received good news and texted her family\u2019s WhatsApp group: \u201cthe medication is back! I\u2019m going back to my immunotherapy.\u201d But by then, the off-and-on schedule had seemingly taken its toll; after two infusions with a different immunotherapy combination, her health began to rapidly decline.<\/p>\n In anticipation of her death, Sam Colop reminded her daughters to follow her detailed instructions for a burial according to Mayan faith: They were to dress her in the green huipil she wore to celebrate her 60th birthday and include incense, her comb, and her mirror in her coffin. On a warm afternoon last July, Sam Colop\u2019s daughters and the oldest of her seven grandchildren were sitting around her bed when she died. \u201cShe opened her eyes widely,\u201d Chuc said, \u201cas if she wanted to look at us one last time.\u201d<\/p>\n \u2018A choice between survival and solvency\u2019<\/p>\n Thousands of miles across the Atlantic Ocean, in the port city of Durban, South Africa, Adri Jeffers, a 57-year-old owner of a small clothing label and mother of three, is embroiled in her own battle over Keytruda. Jeffers \u2014 stylish and businesslike with jet-black hair and thick-framed spectacles that accentuate her angular features \u2014 has top-tier private health coverage. Her fight led to a draining legal process, too, this time before a regulatory body for health insurance.<\/p>\n Like Sam Colop, cancer runs in Jeffers\u2019 family. Her mother lived with breast cancer for many years before she died, and her father died of lung cancer. Still, when Jeffers was first diagnosed with Stage 3 breast cancer in 2005, at age 36, it came as a \u201cmassive shock,\u201d she told ICIJ at her two-story Victorian home.<\/p>\n The diagnosis, she said, was \u201ca life-altering moment \u2014 not something you consider in your 30s whatsoever.\u201d She tried to stay positive around her then-9-year-old twins and 3-year-old son, but the strain was constant: \u201cThey\u2019d look at you very bravely, but then you would walk past their room later and hear them crying. \u2026 Internally you\u2019re basically crumbling, but you [act tough] so as not to upset the kids and your husband.\u201d<\/p>\n After chemotherapy, remission, then a resurgence in 2007, Jeffers kept the cancer in check with vigilant monitoring and carefully managed treatment. But in 2015, she was overtaken by a strange fatigue and weakness. One night at a restaurant, she turned to her husband and said, \u201cI think it\u2019s back.\u201d She was right. Scans showed that the disease was spreading again.<\/p>\n She started what she calls a standard treatment plan, involving rounds of chemotherapy. At times the treatment felt worse than the disease. \u201cShe would deflate like a balloon in front of your eyes\u201d and be bedridden for days, said her husband, Wayne. Jeffers tried to schedule her chemo sessions on Fridays so she could recover over the weekend.<\/p>\n Over time, her oncologist tailored her treatment, and for the next several years, Jeffers would \u201cknock back the cancer a little bit, rest a little bit, and repeat,\u201d she said.<\/p>\n But in 2023, a scan picked up a nodule in her right lung. She soon had a new diagnosis: primary lung cancer. It was spreading aggressively, and the usual therapies were no longer working.<\/p>\n The news took a heavy toll on her children, by then 26 and 21. Her youngest son \u201cwas unable to cope with the diagnosis,\u201d she said, and left an internship in Cape Town early to be with his mother.<\/p>\n Jeffers\u2019 oncologist suggested she was a strong candidate for Keytruda. Jeffers was aware of the drug; she\u2019d seen the news of former U.S. president Jimmy Carter\u2019s remarkable response to it.<\/p>\n \t
Keytruda, known generically as pembrolizumab, is a type of immunotherapy that restores the body\u2019s ability to fight cancer cells. Unlike chemotherapy, which targets rapidly dividing cancer cells, Keytruda disrupts a process that allows some cancers to circumvent the immune system.
\n<\/p>\n
That process involves a protein called PD-1, which is found on the surface of some white blood cells. (White blood cells regulate the body\u2019s immune response.) But some cancer cells express proteins called PD-L1 or PD-L2 that bind to PD-1 and block the body\u2019s ability to recognize and kill cancer cells.<\/p>\n
<\/p>\n Keytruda works by attaching to PD-1, preventing it from interacting with the cancerous cells\u2019 proteins and allowing the immune system to detect and attack the cancer.<\/p>\n
<\/p>\n Pembrolizumab was first invented in the early 2000s by Dutch scientists working for a company that was later acquired by Merck. The drug was approved for medical use in the U.S. in September 2014.<\/p>\n
In May 2023, Jeffers\u2019 oncologist wrote to her medical aid scheme, Medshield, requesting coverage for a combination of chemotherapy and Keytruda. In South Africa, those able to afford private health care \u2014 a minority of the population \u2014 are typically covered through what are called medical aid schemes. These are regulated, not-for-profit medical funds, often administered by for-profit companies, that pay out claims from a pooled system of member contributions.<\/p>\n After Medshield declined her request, stating that Keytruda was not covered by her insurance plan, Jeffers \u2014 now familiar with the bureaucracy of insurance and with the help of her oncologist \u2014 appealed twice. Rejected, she lodged a special request for ex gratia coverage, meaning she appealed to Medshield to provide coverage out of a sense of moral obligation or goodwill. Before the year was out, Medshield had declined that request, too. Keytruda was not on South Africa\u2019s essential medicines list, Medshield argued, and had not met the eligibility requirements for coverage of Jeffers\u2019 cancer. Medshield also asserted that the mutations of Jeffers\u2019 cancer made Keytruda clinically unsuitable \u2014 a claim that her oncologist strongly contested in a letter to the medical scheme.<\/p>\n Jeffers spent over four hours a week sending emails and following up with unresponsive Medshield staff, she told ICIJ. \u201cThe order of business [for insurers] is not to honor claims unless you [the patient] object, especially with oncology,\u201d she said. \u201cSo once I figured that out, I understood you have to object and question.\u201d<\/p>\n Her meticulous organization skills, honed by years of running her business, came in handy. Over the years, she has kept every record of her medical history: invoices, emails, letters, medical test results. Each item is archived, ready to be quickly summoned in her next dispute. \u201cNot everyone has the tenacity and the circumstances to be able to do this,\u201d she said.<\/p>\n As Jeffers\u2019 fight dragged on, her health deteriorated. She\u2019d been in the hospital five times in 2023.<\/p>\n She found a lawyer online who specialized in medical aid claims. On his advice, in the summer of 2024, Jeffers turned to South Africa\u2019s statutory regulatory body for private health insurance plans, the Council for Medical Schemes. \u201cI\u2019d done what I needed to do: [had surgery to remove] the tumor, went onto chemo, and it failed,\u201d she told ICIJ. \u201cSo I should be entitled to use immunotherapy.\u201d<\/p>\n Keytruda is not on South Africa\u2019s list of essential medicines largely because of its prohibitive cost, so it is not available in overstretched public health facilities that serve the majority of the population. (The price tag is nearly $5,000 for a typical 200 mg dose in a country where the median household annual income is only about $5,200.)<\/p>\n My struggle became not only against cancer, but against the very system meant to safeguard me.<\/p>\n \u2014 Adri Jeffers, small business owner and mother of three<\/p>\n Andy Gray, a senior lecturer in pharmacology at the University of KwaZulu-Natal in Durban, who is involved in medicines selection and regulation, said that \u201cthe essential medicines list is based on some sort of estimate of affordability as well as public health priorities.\u201d Although this includes cancer drugs, these are \u201cpredominantly older, off-patent items where there\u2019s either been a decision by the company to market a clone to the state at a different price or [it\u2019s possible to] take advantage of new generic entrants. But in general, the number of monoclonal antibodies [like Keytruda] is severely limited, and that\u2019s based mainly on their cost.\u201d<\/p>\n South African courts have established the precedent of \u201cprogressive realisation\u201d of the right to health, meaning that the government is obligated to take steps to improve access to health care and ensure the realization of the right, but within reason \u2014 resource constraints must be taken into account. While patients increasingly sue the state for access to medicines in some other developing countries, like Guatemala, the courts in South Africa rarely grant orders on constitutional grounds to provide high-cost treatments. There is little hope of uninsured cancer patients gaining access to Keytruda unless they can enroll in a clinical trial.<\/p>\n For the more than 9 million South Africans with private health coverage, disputes with insurers typically end up before the Council for Medical Schemes, a statutory body that regulates private health insurance schemes. The CMS\u2019 rulings are binding and can only be overturned by a court. (When disputes between patients and insurers do go to court, they normally focus on contractual obligations and the law governing medical insurance, not the constitutional right to universal health care.)<\/p>\n Jeffers couldn\u2019t afford to wait while her complaint ground through the official channels. She and her family decided to raise their own funds for Keytruda. The family could have set up an online fundraiser, but \u201cI didn\u2019t feel comfortable with it,\u201d Jeffers said.<\/p>\n They had already successfully applied to a cancer support fund called the Access to Innovative Care Foundation, or AICF. The foundation helps patients in South Africa fund gaps in their coverage \u2014 when there are hefty co-pays for expensive cancer therapies, for example. But the AICF is supported by various Big Pharma companies \u2014 including Roche and Novartis \u2014 ostensibly to mitigate high prices, so it is \u201cin some ways controversial,\u201d said Paul Ruff, a medical oncologist and professor at the University of the Witwatersrand in Johannesburg. In South Africa, a statutory \u201csingle exit price\u201d ensures that manufacturers and importers sell a product at a standard price to all private sector buyers and are prohibited from offering rebates, discounts and other such incentives. Ruff sees the AICF as a way around this regulation, effectively making drugs more affordable to some without having to lower prices.<\/p>\n The AICF declined to say which Big Pharma companies fund it but told ICIJ in a statement that it \u201cassists in ensuring access to healthcare, where such access is hampered by reimbursement and financial challenges,\u201d and that it \u201coperates at an arms\u2019 length basis from donors, guided by a Board comprising seasoned independent directors in the NGO sector, and renowned healthcare professionals, including oncologists.\u201d<\/p>\n Merck told ICIJ in a written statement that it is \u201cdedicated to making our medicines available to patients who may benefit from them as soon as possible \u2014 which is why Merck \u2026 provides many support programs and services to help ensure that people prescribed KEYTRUDA have access to our medicine.\u201d Merck in South Africa, where the company is known as MSD, did not respond to questions about whether it funds the AICF.<\/p>\n In Jeffers\u2019 case, the AICF agreed to cover half the cost of Keytruda, leaving her family to pay hundreds of thousands of rands out of pocket (about $85,000 currently) \u2014 and at a time when their income was drying up, as their business was still recovering from the shock of the COVID-19 pandemic and government restrictions. They were looking at having to spend roughly $2,450 at today\u2019s price every six weeks for an infusion of Keytruda. They downsized their factory and sold off \u201cscooters, sewing machines, fabrics, machines, computers, racking and shelving,\u201d Jeffers\u2019 husband told ICIJ.<\/p>\n Jeffers and her family scraped together the money by early 2024. Within months of starting Keytruda, Jeffers noticed dramatic improvements. The side effects were tolerable; she was regaining her strength. Her scans showed that her tumor was shrinking. \u201cFor the first time I thought I might actually survive this,\u201d Jeffers said.<\/p>\n Still, the financial strain was crippling. Each month, Jeffers said, was \u201ca choice between survival and solvency.\u201d They anticipated 35 infusions of Keytruda prescribed by the oncologist \u2014 with half the cost covered by the AICF \u2014 and hoped for a favorable CMS ruling. After depleting their savings, Wayne Jeffers told ICIJ, \u201cthe plan was then to use her retirement annuity.\u201d<\/p>\n In July 2024, Adri Jeffers finally received good news: The CMS ruled in her favor, laying out a detailed clinical assessment showing \u201cwell demonstrated\u201d improvements in survival rates for people with her type of cancer and ordering Medshield to fund Jeffers\u2019 Keytruda in full. The CMS went even further, stating that the ruling also applied to \u201call other members who are in a similar position.\u201d<\/p>\n Jeffers was \u201cblown away\u201d by what she saw as \u201ca groundbreaking proclamation\u201d that was a victory for herself and other cancer patients. But after the ruling, Jeffers said, Medshield stalled, failing to meet its payment obligations despite her constant emails reminding them. \u201cThe stress in between [treatment and approvals] is enormous,\u201d she told ICIJ, \u201cbecause you know your clock is ticking, you know what the studies say, and you know you\u2019ve got to keep up the treatment.\u201d<\/p>\n A month after the CMS ruling, on Aug. 21, Jeffers received an email from a staff member at Medshield. She soon realized that, while it was about her, it was not intended for her. The staff member, she figured, must have accidentally copied her on internal correspondence. The communication, with Medshield discussing its decision to deny coverage due to Keytruda\u2019s \u201cexceptionally high cost and limited overall survival benefit,\u201d was startling to read. \u201cThey were discussing how they weren\u2019t sure about my survival \u2014 that they couldn\u2019t guarantee survival because I had been on so many treatments,\u201d Jeffers said.<\/p>\n Her husband said he was shocked \u201cto see the value of her life being worked out on a page.\u201d<\/p>\n Jeffers immediately sent the correspondence to her lawyer, deciding not to disclose to Medshield what she had seen for fear of some sort of legal consequence. In September, Medshield wrote to Jeffers to say that they would only reimburse her for what she had paid; they would not fund any further treatment. \u201cBut I had a ruling\u201d from the CMS, she said. \u201cFor us it was trauma and disbelief.\u201d<\/p>\n After Jeffers\u2019 lawyer contacted Medshield, it agreed to continue funding Keytruda. But every victory felt temporary. In July last year, Medshield notified her that it would only cover further Keytruda treatments until November 2025 \u2014 at which point Jeffers would have had 16 sessions \u2014 far fewer than her full complement of 35. Jeffers said that the medical aid scheme backed down again, this time because she publicly criticized Medshield on social media.<\/p>\n Every day she braces for another hurdle. \u201cMy struggle became not only against cancer,\u201d Jeffers told ICIJ, \u201cbut against the very system meant to safeguard me.\u201d<\/p>\n In response to written questions from ICIJ, Medshield said: \u201cFollowing careful consideration, including the evidence presented at the CMS hearing indicating, in contrast to available clinical studies, that the treatment has shown positive results, Medshield elected not to pursue an appeal and proceeded with compliance.\u201d<\/p>\n Medshield said that it \u201cacknowledges that intermittent delays occurred in the member receiving treatment due to previous technical errors in the claiming process, but this did not constitute a decline for the requested treatment or a withdrawal of the approved treatment regime.\u201d<\/p>\n Medshield also highlighted the cost burden of expensive cancer therapies and the risk this poses to the sustainability of medical aid schemes that \u201care governed by legislation requiring them to accept all applicants regardless of prior health history and operate as not-for-profit entities that cannot access external capital.\u201d<\/p>\n The rising costs of treatment and \u201copen-ended funding\u201d for that treatment, Medshield said, would have to be passed on to members. \u201cClaims paid each year must be covered in full by premiums collected meaning there is no buffer against catastrophic oncology expenditure beyond premium increases.\u201d<\/p>\n
Help us fight corruption, injustice and inequality with just $25\/month.<\/p>\n A treatment setback and a social media campaign<\/p>\n In the United States \u2014 the country with the highest drug prices<\/a> and overall health care spending among developed nations \u2014 Tiffany Ferguson, like Jeffers, fears that the next message from her insurer will deny her coverage of Keytruda.<\/p>\n Ferguson, 42, was diagnosed with Hodgkin lymphoma in January 2019, after she started rapidly losing weight and experiencing violent coughing, vomiting and night sweats. \u201cMy doctor showed me the scan and said, \u2018This isn\u2019t good. You either have tuberculosis or cancer,\u2019 \u201d Ferguson recalled. \u201cI remember praying to God that it was tuberculosis.\u201d<\/p>\n Years of treatments \u2014 including chemotherapy, a stem-cell transplant and targeted IV therapy \u2014 held the tumors back, but they returned in 2021.<\/p>\n In March 2022, her doctor, a hematologist-oncologist at the Mayo Clinic in Phoenix, about a two-hour drive from Ferguson\u2019s home in Flagstaff, switched Ferguson to Keytruda. A few months later, Ferguson was in Phoenix, not far from the Mayo Clinic, sitting with her husband, Ryan O\u2019Hara, in their Ford F-150 truck when she received a message from her oncologist. \u201cYour scan looks great,\u201d Ferguson read from her phone, her voice cracking. She couldn\u2019t wait to break the news to her children.<\/p>\n After her first four treatments with Keytruda, she was in complete metabolic remission, the technical way to say there is no active cancer. \u201cI remember sitting at the doctor\u2019s office, looking at the clean scans [and thinking], I wish I had gone on [Keytruda] sooner,\u201d she said.<\/p>\n Then one afternoon in July 2024, as she was sitting in the infusion chair, ready for her next dose, a staff member walked in and told her her insurance had denied further coverage. Ferguson knew that if she went ahead either she or the cancer center would be stuck with the $12,000 Keytruda bill, on top of other costs. \u201cI was already poked, but I elected to stop and reschedule,\u201d she said.<\/p>\n The insurance denial was the beginning of a bureaucratic process that set her treatment back eight weeks while Ferguson, her husband and her medical team exhausted nearly every option to fight the denial.<\/p>\n In the United States, it\u2019s nearly impossible<\/a> to know how many of the more than 220\u202fmillion people with private health insurance are denied coverage for specific treatments. But an analysis of 2023<\/a> data by the health policy organization KFF found that 20% of claims to insurance plans sold through the government marketplace were denied, with fewer than 1% of denied claims appealed. And 56% of those denials are upheld.<\/p>\n Regarding Keytruda prices in the U.S., Merck said in a statement that what patients paid depends largely on their insurer. Slightly more than half of patients paid nothing per infusion, and those who paid were charged \u201cbetween 1 cent and $375 per infusion, after satisfying their deductible\u201d the statement said. It also said it provided about $125 million in co-pay assistance in 2025 and supported a charitable program that delivered more than $1.7 billion in free medicines to patients in the U.S. in 2024.<\/p>\n But when patients are denied coverage, their options are limited. If appeals to the insurer fail, filing a complaint with the state insurance regulator may be the last recourse. Depending on state laws, complaints to regulators may become public records. ICIJ requested complaints filed for denials of Keytruda from regulators in nine states. Two of those states provided information. ICIJ reviewed documents from Texas, which provided six final complaint resolutions, and in three of those the denial was reversed once it was reviewed by regulators. In California, an ICIJ examination of patient requests for independent medical reviews shows 17 cases upheld and 10 cases overturned.<\/p>\n Ferguson knows this system all too well. She is a medical social worker and the CEO of a small health care consulting firm that advises and trains hospital staff to handle case management, including insurance paperwork. \u201cThis situation blurred my personal life and my professional life,\u201d she said. \u201cHere I\u2019m on the receiving end of this issue.\u201d<\/p>\n In its denial letter dated July 17, 2024, CVS Caremark, the pharmacy benefits manager for Ferguson\u2019s insurer, CareFirst BlueCross BlueShield, said it only covered the drug for 24 months for her \u201chealth condition.\u201d<\/p>\n For Ferguson, the insurer\u2019s argument \u201cmade absolutely no sense.\u201d Keytruda has been the only treatment that has kept her in remission long-term, she said. Ferguson and her medical team found a recent study that they said showed the drug worked beyond the two-year period. \u201cHow could [the insurer] not be aware of this?\u201d she wondered.<\/p>\n CareFirst BlueCross BlueShield did not respond to ICIJ\u2019s requests for comment for this story.<\/p>\n Ferguson\u2019s care team submitted documentation of the recent study. A doctor from a third-party advocate, PayerWatch, which was then her husband\u2019s employer, helped file the appeal.<\/p>\n Ferguson and O\u2019Hara spent countless hours on the phone and in front of the computer dealing with the insurer\u2019s staff. Ultimately the insurer upheld the denial, rejecting both her appeals.<\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/Quetzaltenango_Cancer-10-760x427.jpg\")
\n Quetzaltenango, Guatemala. Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/Quetzaltenango_Cancer-17-760x427.jpg\")
\n Many people in Latin America file amparos, a form of legal action, to access costly health care. Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/IGSS-credit-\u2014-wikimedia-commons-760x427.jpg\")
\n The Instituto Guatemalteco de Seguridad Social (the Social Security Institute), known locally as IGSS. Image: Wikimedia Commons <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/Quetzaltenango_Cancer-4-Recovered-760x427.jpg\")
\n Chuc Sam in her mother\u2019s office, where Sam Colop\u2019s things are displayed: a Maya calendar, the flag of the\u00a0national academy of Mayan languages, and her sun hats. Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/Quetzaltenango_Cancer-8-760x427.jpg\")
\n Chuc Xum playing with his granddaughter on the rooftop. Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/Quetzaltenango_Cancer-3-1-427x427.jpg\")
\n A childhood photo of Sam Colop with her parents and siblings in the 1960s. Image: Laura Garcia \/ Plaza P\u00fablica <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/PXL_20260326_135216534-760x427.jpg\")
\n Adri Jeffers, 57, runs a small clothing label and has three children. Image: Micah Reddy \/ ICIJ <\/p>\n
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\n Jeffers in her home office, where she spent hours advocating for her insurer to cover the cost of Keytruda. Image: Micah Reddy \/ ICIJ <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/PXL_20260326_140621732-760x427.jpg\")
\n Jeffers with her husband, Wayne. Image: Micah Reddy \/ ICIJ <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/PXL_20260326_134630994-760x427.jpg\")
\n Jeffers\u2019 cancer battle took an emotional and financial toll on her family. Image: Micah Reddy \/ ICIJ <\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/PXL_20260326_140445527-760x427.jpg\")
\n Jeffers in the garden of her home in Durban, South Africa. Image: Micah Reddy \/ ICIJ <\/p>\n
\n\t\t GIVE TO HELP US INVESTIGATE!
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\n\t Tiffany Ferguson, 42, was diagnosed with Hodgkin lymphoma in 2019.<\/p>\n![\"\"](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/04\/IMG_0646-320x427.jpeg\")
\n Ferguson with her son. <\/p>\n
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