Healthy China Tour Recap: Breaking the Chains of Thalassemia, Protecting Every Child’s Health

Since its launch in May 2023, the Healthy China Tour has traveled to three provinces with high prevalence of thalassemia, holding eight major events. More than 1,000 children with thalassemia and their families have benefited from 15 free medical consultations, while around 700 grassroots doctors participated in on-site training sessions to enhance their capacity in thalassemia diagnosis and treatment.

Over the past year and a half, the Beijing Jingyan Foundation has journeyed from the nation’s capital to regions across China, together with its caring partners. Covering more than 20,000 kilometers, the Foundation has measured the land with its footsteps—turning compassion into concrete action to prevent and control thalassemia and contributing the power of Jingyan to the vision of a Healthy China.

For Love and Health: Together Against Thalassemia

Thalassemia, commonly known in China as “Di Pin,” is an inherited hemolytic anemia caused by gene mutations or deletions that reduce or prevent the synthesis of globin chains. The World Health Organization lists thalassemia as one of the six most common genetic disorders posing a serious threat to human health.

According to available data, an estimated 345 million people worldwide carry thalassemia genes, including about 30 million in China. Provinces south of the Yangtze River, such as Hainan, Yunnan, Guizhou, Fujian, Jiangxi, Hunan, Guangdong, and Guangxi, are among the regions with the highest prevalence of thalassemia.

Children suffering from severe thalassemia must rely on lifelong blood transfusions and iron chelation therapy to survive. The only chance for a cure is a hematopoietic stem cell transplant from a compatible donor. However, the long-term cost of standardized treatment can overwhelm an ordinary family. Even for those who qualify for transplantation, the hundreds of thousands of yuan required for surgery remain an unbearable financial burden. And for some, the ordeal does not end with surgery—severe infections or graft rejection may once again push these children to the edge of life and death.

As one of the earliest public welfare organizations in China to focus on thalassemia support, the Beijing Jingyan Foundation officially launched the Building Love for Thalassemia Action initiative in 2018. The project provides ongoing medical assistance to children with thalassemia in need, helping them overcome financial barriers and gaps in medical resources. It also actively promotes thalassemia prevention and collaborates with local governments in high-prevalence regions to strengthen disease prevention and control efforts, aiming to reduce the incidence of severe pediatric illnesses from the source.

In recent years, public awareness of thalassemia has steadily increased, and the Chinese government has introduced a series of policies to strengthen the prevention and control of this disease. Since 2015, the national thalassemia prevention and control program has been implemented in ten high-prevalence southern provinces, including Guangdong and Guangxi. The Healthy China Initiative 2019–2030, released in 2019, explicitly calls for the expansion of thalassemia prevention projects in high-risk provinces, gradually increasing their coverage.

Having long been committed to thalassemia support and prevention, we have observed significant disparities in the progress of thalassemia prevention across regions, influenced by differences in economic development, technology, and medical infrastructure. In some provinces, children with thalassemia still face difficulties in accessing medical care or cannot afford treatment, while grassroots doctors in certain high-prevalence areas lack timely access to scientifically sound treatment guidelines.

After extensive research and careful preparation, the Beijing Jingyan Foundation officially launched the Healthy China Tour in May 2023. Leveraging years of experience, resources, and expertise in thalassemia care, the initiative brings high-quality medical support and compassionate assistance to regions where it is most urgently needed.

The Foundation collaborates with renowned medical teams from across China to conduct on-site screenings in high-prevalence areas, organizes authoritative experts to provide training on thalassemia diagnosis, treatment, and prevention, and builds online platforms to promptly address questions from grassroots doctors. The programs actively strengthen local healthcare systems and reaches deep into towns and villages to visit children with thalassemia. Extensive awareness campaigns are also carried out to enhance public understanding and attention to thalassemia at the community level.

Heading South: Focus on Yunnan, Guizhou, and Hainan

As of the end of 2024, the Healthy China Tour has held a total of eight events, primarily in the provinces of Yunnan, Guizhou, and Hainan. In selecting event locations, the initiative has consistently adhered to the principle of “going where we are needed most.”

Yunnan Province is one of China’s high-prevalence regions for thalassemia. Areas near and south of the Tropic of Cancer show higher positive screening rates, with border regions having higher prevalence than central areas, and minority populations carrying thalassemia genes at higher rates than the Han population. The Beijing Jingyan Foundation conducted the Healthy China Tour in Yunnan in May 2023, November 2023, and November 2024, covering Dehong Dai and Jingpo Autonomous Prefecture, Baoshan City, and Xishuangbanna Dai Autonomous Prefecture. Xishuangbanna, as the earliest pilot site of the Foundation’s Zero Thalassemia Plan, welcomed the Healthy China Tour again in December 2024 for multiple expert-led medical consultation events.

Epidemiological data from Guizhou Province show that approximately 1 in 10 people carry thalassemia genes, with higher prevalence in Qiannan and Qianxinan Prefectures, which border Yunnan and Guangxi and have large minority populations.

The Foundation has therefore prioritized these areas, conducting the Healthy China Tour in Sandu Shui Autonomous County, Luodian County, and Zhenfeng County in September 2023, January 2024, and September 2024, respectively.

In the winter of 2024, the Healthy China Tour extended its reach to China’s southernmost region—Hainan Island, one of the country’s ten high-prevalence provinces for thalassemia. In November, the initiative visited four locations—Sanya City, Baoting Li and Miao Autonomous County, Lingshui Li Autonomous County, and Ledong Li Autonomous County—to conduct free thalassemia screenings. In Baoting and Ledong, training sessions were held for local doctors, covering prevention and treatment strategies, patient referral protocols, and pre- and post-transplant care for children with thalassemia.

Over a period of a year and a half, the Healthy China Tour has traveled more than 20,000 kilometers, bringing high-quality medical resources and the Jingyan Foundation’s expertise to the regions that need them most.

Connecting Quality Resources to Support Thalassemia Children’s Medical Care

At each stop, the Building Love for Thalassemia Action project team meets with local grassroots doctors, visits villages to see children in urgent need of treatment and reconnects with Jingyan-supported children who have previously received assistance. These on-site visits allow the team to better understand the most pressing needs of children with thalassemia and explore how to support local communities and governments effectively.

After years of dedicated work in thalassemia care, we have found that many people, including some grassroots doctors, still have limited knowledge about the disease. Questions such as “Which hospitals within or outside the province can perform hematopoietic stem cell transplants?”, “Is it necessary to go to major cities like Beijing or Shanghai for treatment?”, or “How much does the surgery cost?” are often difficult for both families and even some local doctors to answer accurately.

Through conversations with parents of children with thalassemia, we have learned that some grassroots doctors lack sufficient knowledge about the disease and are unable to provide appropriate treatment plans or guidance. As a result, some parents must rely on their own experience to decide when their children should receive blood transfusions, rather than determining the need through proper medical tests. Without regular transfusions and iron chelation therapy, children with severe thalassemia cannot meet the prerequisites for undergoing life-saving stem cell transplantation.

The Beijing Jingyan Foundation has conducted in-depth assessments of the core needs of thalassemia patients, grassroots doctors, and local governments. Leveraging its network of long-term partners, the Foundation has organized top-tier medical teams from across China to join the Healthy China Tour activities.

Shenzhen Children’s Hospital and Nanfang-Chunfu Children's Institute of Hematology & Oncology of the Dongguan Taixin Hospital are the Jingyan Foundation’s most frequent partners in the Healthy China Tour. Both hospitals rank among the top in China for the number of hematopoietic stem cell transplants performed and possess advanced medical capabilities as well as extensive clinical experience.

To address the medical costs and accessibility challenges faced by families of children with thalassemia, the Healthy China Tour has actively invited high-quality local medical institutions to participate. Renowned hospitals such as the First People’s Hospital of Yunnan Hospital, Yunnan Maternal and Child Health Hospital, Shanghai Children’s Medical Center, Hainan General Hospital, Shanghai Children’s Medical Center, Hainan Branch (Sanya Maternal and Child Health Hospital), and Haikou People’s Hospital have joined the initiative, providing free medical consultations for thalassemia patients and offering training programs for local doctors to enhance their diagnostic and treatment capabilities, thereby supporting regional thalassemia prevention and control efforts.

At the same time, the Healthy China Tour actively leverages social resources by inviting charitable organizations such as BGI Group to join, assisting patients with genetic testing and HLA typing, and providing support for children with severe thalassemia who have successfully completed screening and matching.

15 Free Clinics, 700 Doctors, and Over 1,000 Children and Families Served 

Over a year and a half, the Healthy China Tour made eight trips to Dehong, Baoshan and Xishuangbanna in Yunnan, Sandu, Luodian, and Zhenfeng in Guizhou, and Sanya in Hainan. During these visits, the initiative carried out a series of activities, including free medical consultations for children with thalassemia, training for grassroots doctors, home visits to affected families, and public education campaigns.

By the end of 2024, the eight stops of the Healthy China Tour had conducted 15 free medical screening events, with nearly 1,000 children with thalassemia and their families participating. At each consultation site, children and parents arrived early to wait, experts carefully conducted examinations and patiently communicated with families, and local doctors attentively observed and learned from the specialists. For children who meet the eligibility criteria of the Building Love for Thalassemia Action, the Beijing Jingyan Foundation follows up on their treatment and provides financial support according to their medical needs and family circumstances.

The Healthy China Tour also partnered with local health authorities in Yunnan, Guizhou, and Hainan to hold eight thalassemia treatment training sessions, with around 700 grassroots doctors attending in person. Some of the courses were also broadcast online. Notably, the training held in Dehong, Yunnan, in May 2023 was streamed via the national “Cloud Maternal and Child Health” telemedicine platform, enabling all maternal and child health hospitals across Yunnan Province to participate remotely.

In addition, staff and volunteers from the Building Love for Thalassemia Action project visited approximately 50 thalassemia-affected families during the Healthy China Tour, gaining a comprehensive understanding of the children’s pre- and post-surgery living conditions, psychological well-being, and overall health.

Towards a Thalassemia-Free Future

From the very beginning, achieving “Zero Thalassemia” has been the long-term goal of the Building Love for Thalassemia Action initiative and a key mission of the Beijing Jingyan Foundation. At every stop of the Healthy China Tour, the Foundation actively held meetings with local government departments to discuss the current situation and future directions of thalassemia prevention, treatment, and support. Through these efforts, the Foundation continues to advance the Zero Thalassemia Plan across different regions.

The Zero Thalassemia Plan is an upgraded phase of the Building Love for Thalassemia Action project. Building on the success of previous efforts, it represents a new step by the Beijing Jingyan Foundation to accelerate the goal of reducing thalassemia cases to zero. The initiative provides financial and technical support to local governments in high-prevalence regions, helping them offer free thalassemia screening, diagnosis, and related medical interventions for people of marriageable and childbearing age. 

Xishuangbanna was among the first regions to pilot the Zero Thalassemia Plan. On November 7, 2023, the Beijing Jingyan Foundation signed a cooperation agreement with the Xishuangbanna Prefecture Health Commission, Shenzhen BGI Genomics Co., Ltd., and Shenzhen Children’s Hospital to jointly support local children affected by thalassemia and strengthen the region’s overall prevention and treatment capacity. Over the past year since the agreement was signed, the Foundation has funded hematopoietic stem cell transplants for 16 children with thalassemia from Xishuangbanna, providing a total of RMB 490,000 in medical assistance.

Encouragingly, public awareness of thalassemia has continued to grow in recent years, with the national government introducing a series of policies to enhance disease prevention and control. In November 2023, severe thalassemia was officially included in China’s National List of Rare Diseases. That same month, the National Health Commission launched the National Thalassemia Prevention and Control Collaboration Network to strengthen coordination and implementation nationwide. These developments give us even greater confidence in the vision of achieving a future free from thalassemia.

Looking ahead, the Healthy China Tour will continue its journey to more regions across China, especially provinces with a high prevalence of thalassemia. The program will carry on with public education campaigns, free medical consultations, screening initiatives, and training sessions for grassroots doctors—raising broader awareness and understanding of thalassemia while helping more families move beyond the challenges of the disease. The Beijing Jingyan Foundation will also continue to strengthen partnerships with local governments in high prevalence regions, promoting pilot collaborations to accelerate the realization of a Zero Thalassemia future.

We firmly believe that thalassemia is both preventable and manageable — with premarital and prenatal screening serving as effective measures to stop the disease at its source.

We hope to leverage the strengths of the Jingyan Foundation as a family foundation to support local governments in high-prevalence regions in advancing thalassemia prevention and control efforts.

And we look forward to joining hands with more compassionate partners to help thalassemia-affected families overcome the challenges they face — working together toward the shared vision of a Zero Thalassemia future.