As cutting-edge therapies like CAR-T, gene editing, and targeted drugs revolutionize treatment for pediatric cancers and rare diseases, insurance solutions must evolve to meet this rapidly changing landscape and alleviate the staggering financial burden on families.
In China, parents are concerned about the exorbitant costs of advanced treatments for serious childhood illnesses. The financial burden is staggering - from CAR-T cell therapy for pediatric leukemia reaching $170,000 (1.2 million RMB) per session, to the $2.12 million price tag for a single gene therapy injection to treat spinal muscular atrophy, an ultra-rare disease.
With the global rare disease drug market exceeding $119 billion in 2022, parents are increasingly prioritizing health insurance with robust coverage for cutting-edge treatments. Fueled by medical innovations targeting juvenile cancers and genetic disorders, this dynamic landscape presents opportunities for insurers to upgrade critical illness products for children, better aligning with evolving family needs while enhancing competitiveness.
This article reviews medical trends in juvenile critical illnesses and some promising innovative treatments and provides key considerations for insurers looking to develop products to address these needs.
Juvenile critical illnesses often have severe symptoms, leading to organ damage and functional impairments. A poor prognosis can affect a child's long-term health. A 2023 survey by Prudential Hong Kong found that 90% of respondents worry about their children developing critical illnesses, significantly more than those who worry about the future of their own health (71%).1
Many juvenile critical illnesses lack clear treatment methods or have inadequate existing treatments. Recent medical innovations have focused on hard-to-treat diseases in children, which can be categorized into two main types:
Malignant tumors are the leading critical illness in children, accounting for more than 50% of juvenile illness claims. Compared to adult cancers, pediatric malignant tumors are more severe, have lower survival rates, and allow fewer treatment options. That is in part because children's rapidly growing bodies are more susceptible to the invasive nature of cancer, leading to quicker tumor progression and potentially greater disruption to development, even if treatment is successful. Additionally, the long-term side effects of treatment can be more impactful due to the child's ongoing growth and development.2
Rare diseases in childhood account for 50% to 70% of all rare diseases. Many of these diseases are genetic or congenital, characterized by sudden onset and high costs, imposing a heavy burden on families.
The rapidly advancing landscape of cancer research and the array of strategies being explored to improve treatment outcomes frequently harness genetic engineering to leverage the power of the immune system.
Below is a snapshot of the cutting-edge therapies and technologies researchers are developing to more precisely target and eradicate various childhood cancers.
The chart below lists various childhood cancers and highlights some of the cutting-edge, innovative treatment approaches being explored or developed for these conditions.
More than 60% of rare diseases are congenital, including hemophilia, spinal muscular atrophy (infantile SMA), and Huntington's disease. Rare disease drugs have been a focal point of medical innovation. Registered clinical trials in China for orphan drugs – medications developed to treat rare diseases or disorders that affect a small number of patients compared to the general population – cover 31 rare diseases, with potential treatment breakthroughs expected in the coming years.
Rare diseases are an ideal target for gene therapy research. Gene therapy is considered a new track for global technology and industrial competition. Successful gene therapies could be extended to other diseases, offering personalized treatment options and potentially overcoming the limitations of traditional drug treatments.
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As pioneering medical breakthroughs unlock new treatment frontiers for juvenile critical illnesses, insurers must adapt product designs to provide adequate financial protection and meet the evolving needs of families facing these pioneering therapies. Such challenges are not unique to the Chinese market.
Some insurers have responded to these growing needs for coverage, for example, incorporating proton heavy ion therapy and CAR-T for pediatric cancer into commercial medical insurance. Other insurers have partnered with organizations that can provide genetic testing for cancer to provide services after a cancer diagnosis. Some rare diseases have been included in the coverage of children's critical disease insurance, breaking through the exclusion limit for congenital diseases. This benefit is typically applied by removing "congenital" exclusions and adding language such as: “Our liability for this disease is not limited by the exclusion of 'hereditary diseases, congenital malformations, deformations or chromosomal abnormalities.’”
Other approaches are detailed below.
Innovative treatments for juvenile critical illnesses are often costly, far exceeding the affordability of average families. Therefore, juvenile disease insurance requires high coverage amounts. One product strategy in the market is to raise the benefits for specific diseases by providing an additional 100% sum assured for high-cost diseases, such as leukemia and some rare diseases. The incidence of these diseases is relatively low and has little impact on the overall product price.
Diagnoses for congenital diseases are being made earlier, including through prenatal tests, genetic testing, and newborn screening. Early insurance enrollment is crucial for providing timely protection for children. Recently, some insurance companies in Hong Kong have introduced prenatal insurance policies and extended adult underwriting benefits to minors, suggesting areas for insurers to invest in to gain a competitive edge.
Juvenile insurance products in South Korea include extensive coverage for cancer diagnosis, genetic testing, surgery, and innovative therapies, providing a full treatment pathway. Advanced treatments for adult cancers, such as proton/carbon ion therapy and CAR-T, are also applicable to common pediatric cancers, presenting opportunities for product enhancement and diversification.
Many critical illness insurance products offer 200% coverage for rare pediatric diseases, boosting the product's leverage and cost-effectiveness by strengthening rare disease coverage.
As groundbreaking medical innovations continue to push the boundaries in treating juvenile cancers and rare diseases, it is imperative that insurance products evolve in lockstep to provide comprehensive coverage aligning with these advancements and their immense financial burden on families. By prioritizing high coverage amounts, early enrollment opportunities, robust cancer treatment pathways, and enhanced cost-effectiveness for rare disease therapies, insurers can better support families navigating these extraordinary medical journeys.
Other references
https://www.precedenceresearch.com/orphan-drugs-market
https://www.prudential.com.hk/tc/all-news/prudential-hong-kong-family-critical-illness-resilience-survey/
中国精算师协会：国民防范重大疾病健康教育读本
郝婵娟, 倪鑫. 儿童罕见病诊治现状及展望[J]. 罕见病研究, 2022, 1(3): 229-232.
Xiang Z, Jiang W, Yan B, Jiang J, Zheng H. Current status and trend of clinical development of orphan drugs in China. Orphanet J Rare Dis. 2022 Jul 27;17(1):294.
Proton Therapy for Treating Childhood Cancer, https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/proton-therapy-for-treating-childhood-cancer
Larson RC, Maus MV. Recent advances and discoveries in the mechanisms and functions of CAR T cells. Nat Rev Cancer. 2021 Mar;21(3):145-161
Huang XJ. [To promote innovative development of CAR-T cellular immunotherapy in China]. Zhonghua Xue Ye Xue Za Zhi. 2019 Mar 14;40(3):177-178.
郑伟涛，李涵.TCR-T免疫治疗肿瘤：现状、挑战及展望[J].中国癌症杂志,2023, 33 (07): 707-716.
https://www.neuboron.com/frontier
北京医学会罕见病分会, 北京医学会医学遗传学分会, 北京医学会神经病学分会神经肌肉病学组, 等. 脊髓性肌萎缩症多学科管理专家共识 [J] . 中华医学杂志,2019,99 (19): 1460-1467.
