Mason Henderson with his mother, Tabitha Lowe, in November during a visit to New York, where Henderson was participating in a clinical trial to treat his brain cancer. Henderson died in May after a two-year battle with the disease. (Jerry Lowe)<\/p>\n
Eighteen months after his initial diagnosis, chemotherapy hadn\u2019t slowed 21-year-old Mason Henderson\u2019s rare brain tumor, which had spread to his spinal fluid. So he left his home in southeastern Texas to spend three weeks in a clinical trial in New York City.<\/p>\n
But that failed, too, leaving a murky path for Henderson, whose cancer was so rare the World Health Organization had only given it a name<\/a> in 2021. So early this year, Henderson\u2019s doctors, evaluating his tumor\u2019s deep genetic language, turned to a drug made by Merck and AstraZeneca called Lynparza.<\/p>\n It was not the standard of care for Henderson\u2019s condition \u2014 there wasn\u2019t really any standard, which is not unusual for rare cancers. And Henderson\u2019s insurance would not pay for it, despite the careful justification given by the two specialists treating him.<\/p>\n \u201cThey have no guidelines for his cancer,\u201d Henderson\u2019s mother, Tabitha Lowe, said in a March interview with KFF Health News. \u201cThey\u2019re discriminating against him because his cancer is so rare.\u201d<\/p>\n Tabitha Lowe and her son Mason Henderson. Lowe spent six weeks trying to get an $8,700-a-month drug for her son that the family\u2019s pharmacy benefit manager wouldn\u2019t cover. (Tabitha Lowe)<\/p>\n Every year, tens of thousands of people \u2014 representing about a quarter of all U.S. cancers<\/a> \u2014 are diagnosed with tumors that differ enough from frequently identified ones to be called rare. In determining whether to reimburse treatment for such ailments, insurers turn to Food and Drug Administration labels and expert guidelines.<\/p>\n But these rare afflictions often lack targeted, FDA-approved treatment options, even though in many cases, molecular tests offered by diagnostic companies and university labs can provide a strong suggestion of what will work.<\/p>\n \u201cInsurance coverage routinely trails behind what genomic testing reveals about a patient\u2019s cancer and what the science supports,\u201d said Olivier Elemento, director of Weill Cornell Medicine\u2019s Englander Institute for Precision Medicine.<\/p>\n Henderson\u2019s neuro-oncologists, Jacob Mandel of the Baylor College of Medicine and Jessica Schulte of NYU Langone Health, decided to try Lynparza, also known by the generic name olaparib, in combination with chemotherapy. There wasn\u2019t a wealth of evidence behind the drug but there was a \u201cbiologically reasonable\u201d assumption it would help, Schulte said, because cells in tumors like Henderson\u2019s have a flaw that drugs like Lynparza can target. Providers in several previous cases had seen brain cancers like Henderson\u2019s respond well to the drug.<\/p>\n \u201cIn general, we try to base our treatment decisions on large patient studies\u201d involving hundreds of patients, Schulte said. But large clinical trials will probably never be conducted for a cancer as rare as Henderson\u2019s.<\/p>\n Schulte, who specializes in brain cancers in young adults, sees only a few of Henderson\u2019s type each year, she said.<\/p>\n Mandel prescribed the drug on Jan. 16. Liviniti, Henderson\u2019s pharmacy benefit manager, responded with a quick refusal on Jan. 30. Two weeks later, the company sent an explanation: \u201cLynparza is not approved for the diagnosis provided.\u201d Out-of-pocket, the drug would cost about $8,700 per month, Lowe said. Liviniti did not respond to phone calls seeking comment.<\/p>\n Before his diagnosis, Henderson was a healthy, athletic young man with a big heart, faith in Jesus, and a tight group of friends, his mother said. At Evadale High School, north of Beaumont, Texas, Henderson played baseball and football and was homecoming king in 2022. After graduating, he worked at the local paper mill, spending his free time hunting, fishing, and exploring the woods on an all-terrain vehicle. He wanted to be a police officer, Lowe said.<\/p>\n Henderson was 20 on March 15, 2024, when his brother Gunner found him at the top of the stairs in the family home with his head in his hands. \u201cHe was in the post-seizure state,\u201d Lowe said. \u201cHe couldn\u2019t talk. Was crying. Trying to hug me. Could not communicate.\u201d<\/p>\n At an emergency room in Beaumont, an MRI revealed a large tumor. He was transferred to Baylor St. Luke\u2019s Medical Center in Houston and diagnosed with a form of brain cancer called diffuse hemispheric glioma (H3-G34 mutant).<\/p>\n Surgery a few days later cut out 90% of the tumor, but brain cancers are almost impossible to remove entirely, because of the delicacy of the tissue they\u2019re embedded in, Schulte said.<\/p>\n After 16 months of radiation and chemotherapy, a September 2025 scan showed the cancer had spread to his spinal cord, a condition called leptomeningeal disease that usually proves fatal within a few months. Mandel contacted Schulte about a clinical trial she was leading. It consisted of 11 days of brutal craniospinal irradiation, which left Henderson exhausted. When it was over, the cancer was still there.<\/p>\n \u201cThe family was wonderful,\u201d Schulte recalled. \u201cThey were trusting in their team, but they asked appropriate questions to make sure that we were thinking about Mason as a person.\u201d<\/p>\n Coverage Refused<\/strong><\/p>\n Lynparza, approved by the FDA in 2014 for ovarian cancer, works by interfering with tumor cells\u2019 ability to multiply. After Liviniti, the pharmacy benefit manager, refused coverage for Henderson, his family turned to Jefferson County. Henderson\u2019s stepfather, Jerry Lowe, flies helicopters for the county sheriff\u2019s office.<\/p>\n The county, which had the final say on reimbursement because it pays claims directly for its employees\u2019 family health coverage, also refused. When Henderson\u2019s family appealed, the county review board authorized an independent medical reviewer to look at the case. The nonspecialist supported the board\u2019s finding and recommended another drug, but Henderson\u2019s doctors disagreed. The board didn\u2019t respond to a request for comment.<\/p>\n AstraZeneca had also turned down the family\u2019s request for a donation of the drug. By then it was March, six weeks after Lynparza was prescribed.<\/p>\n Cancers that start in the brain are unusual \u2014 only about 25,000 cases are diagnosed in the U.S. each year, compared with 320,000 breast cancers and 229,000 lung cancers. Only a few hundred people each year, mostly young adults, are diagnosed with Henderson\u2019s type, according to Schulte.<\/p>\n Treatment options for diffuse hemispheric glioma are few; brain cancers in general are often excluded from clinical trials. They represent a relatively small market for a pharmaceutical company. Testing drugs against them is risky, because of the brain\u2019s sensitivity, and difficult because the drug must pass through the tightly packed cell walls lining the blood vessels, known as the blood-brain barrier.<\/p>\n Patients like Henderson often struggle to get medications that are prescribed off-label based on recent scientific findings. (Tabitha Lowe)<\/p>\n Still, drugmakers are increasingly homing in on narrower and potentially more accurate drug targets as science reveals more of cancer\u2019s remarkable molecular diversity.<\/p>\n Under guidance issued in 2022<\/a>, the FDA has approved nine drugs<\/a> to be used for patients whose tumors have specific mutations, regardless of the organ where the cancer first appeared. These \u201ctissue agnostic\u201d drugs are still a tiny minority, but as genome sequencing becomes more common \u2014 growing numbers of oncologists<\/a> order it for patients \u2014 insurers will have to keep up, Weill Cornell\u2019s Elemento said.<\/p>\n Several U.S. research groups are hosting clinical experiments known as \u201cbasket trials,\u201d in which mostly late-stage cancer patients are put on drug combinations based on tumor genetics, rather than the organ of origin.<\/p>\n The American Society of Clinical Oncology has recruited more than 3,000 patients into one of the biggest efforts, the Targeting Agent and Profiling Utilization Registry, or TAPUR<\/a>, which began in 2016. It provides off-label treatments at no cost to advanced-staged cancer patients at more than 270 U.S. oncology practices.<\/p>\n About half the participants have benefited, and in rare cases the treatment kept patients alive for a year or more or seemingly cured them, said Richard Schilsky, the program\u2019s founder and its principal investigator until recently. The results have led to changes in several treatment guidelines, he said, and a change in guidelines \u201cusually is sufficient to create a pathway to reimbursement by insurance.\u201d<\/p>\n Research has uncovered \u201cquite a few\u201d cases in which Lynparza was effective against a variety of tumor types, Schilsky said. But like many clinical trials, TAPUR excludes patients with primary brain tumors \u2014 like Henderson\u2019s.<\/p>\n Oncologists disagree on how broadly genetics discoveries will transform cancer diagnosis. Cancers are currently identified as breast, colon, lung, etc., because those are the cells that pathologists see when diagnosing a tumor, said Razelle Kurzrock, the associate director of clinical research at the Medical College of Wisconsin Cancer Center.<\/p>\n But that\u2019s a \u201cmistake of history,\u201d she said. \u201cYou\u2019re making the diagnosis based on the pathologist\u2019s view of the surface of the cell rather than what\u2019s actually driving the cancer.\u201d<\/p>\n A Dutch father and son invented the first light microscope to peer at cells around 1590. The Human Genome Project finished in 2003. If genome-enabled next-generation sequencing, now used for molecular tumor scans, had come before the light microscope, \u201cno one would look at organ of origin,\u201d she said.<\/p>\n Kurzrock leads I-PREDICT,<\/a> a clinical trial in which every patient gets individualized cancer therapy based on DNA, RNA, and protein patterns in their tumor. Instead of getting drug combination A or B, \u201cin our trial everyone gets a different set of drugs,\u201d she said. Physicians can instead use standard therapies, she said, and their patients are the study controls.<\/p>\n Other oncologists see limitations to purely genetic diagnosis. Certain cancer centers advertise by saying, \u201c\u2018We\u2019ll sequence your tumor better than anyone else, and therefore you\u2019ll live longer and do better if you come here,\u2019\u201d said Kathy Miller, a professor of oncology at Indiana University. \u201cBut the evidence doesn\u2019t support those claims right now.\u201d<\/p>\n \u2018I Wouldn\u2019t Give Up\u2019<\/strong><\/p>\n In Henderson\u2019s case, the problem was never diagnosis; Baylor clinicians identified his cancer type quickly. But its rarity and location made the tumor hard to fight, and the lack of financial help made it even harder.<\/p>\n On March 8, Tabitha Lowe went on Facebook, LinkedIn, and Instagram with photos of her son and descriptions of his plight. She tagged AstraZeneca, Liviniti, and the county board that had denied his reimbursement. \u201cRare cancer patients are denied treatment simply because their cancers are rare,\u201d she wrote in one of the posts, which were shared hundreds of times.<\/p>\n \u201cI hated to take this route, but when it comes to my kids there\u2019s nothing I won\u2019t do,\u201d she told KFF Health News. \u201cI\u2019ve cried, I\u2019ve stressed out, but I wouldn\u2019t give up.\u201d<\/p>\n Tabitha Lowe took to Facebook to try to get her son Mason Henderson access to the brain cancer treatment his doctors sought for him. (Tabitha Lowe)<\/p>\n The next day, AstraZeneca\u2019s patient assistance program, which had turned down her request for the drug two weeks earlier, emailed her with good news: A bottle of 60 Lynparza pills had been shipped to her pharmacy. Company spokesperson Tara Parsell said patient confidentiality prevented her from commenting on its actions.<\/p>\n Lowe\u2019s six-week battle had paid off. Now, \u201cit\u2019s in God\u2019s hands,\u201d she said in an April interview. By mid-April, however, Henderson could no longer walk. Then came issues with his speech. \u201cIt all happened so fast.\u201d<\/p>\n On May 4, in the family\u2019s living room, where his bed had been moved, Henderson died, after taking the drug for nearly two months. Hundreds attended his memorial service; their cars made a procession seven minutes long.<\/p>\n The family has created a college scholarship in Henderson\u2019s name for graduates of the local high school. An online campaign and bass fishing tournament had raised nearly $24,000 by September. Willie Robertson of Duck Dynasty, professional pickleballer Tyson McGuffin, and pro fisherman Hank Parker donated items for a raffle. Country singer Mark Chestnutt sent two signed guitars, Lowe said.<\/p>\n \u201cFaster treatment would have been better,\u201d although it\u2019s hard to know whether it would have extended Henderson\u2019s life, NYU\u2019s Schulte said.<\/p>\n \u201cI will always wonder,\u201d Lowe said in a phone interview this summer. \u201cCancer don\u2019t pause while the paperwork\u2019s in progress.\u201d<\/p>\n \u201cThere\u2019s something especially painful thinking about how much time I spent fighting healthcare instead of being with Mason,\u201d she added. \u201cI was forced to become a PBM, insurer, research expert, all while trying to be his mother.\u201d<\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/em><\/p>\n This article<\/a> first appeared on KFF Health News<\/a> and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License<\/a>.<\/p>","protected":false},"excerpt":{"rendered":" Mason Henderson with his mother, Tabitha Lowe, in November during a visit to New York, where Henderson was participating in a clinical trial to treat his brain cancer. Henderson died in May after a two-year battle with the disease. (Jerry Lowe) Eighteen months after his initial diagnosis, chemotherapy hadn\u2019t slowed 21-year-old Mason Henderson\u2019s rare brain…<\/p>\n","protected":false},"author":0,"featured_media":15644,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-15643","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-articles"],"_links":{"self":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts\/15643"}],"collection":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=15643"}],"version-history":[{"count":0,"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/posts\/15643\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=\/wp\/v2\/media\/15644"}],"wp:attachment":[{"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=15643"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=15643"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medical-article.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=15643"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}