Hainan Province plans to achieve zero-inherited births and zero omitted cases in thalassemia by 2030. After four months of visitation and research, Fang Ming, a thalassemia project specialist from Hainan Beatitudes Foundation, believes that as long as all parties in society work together, this goal can be achieved.
Thalassemia, an inherited blood disorder, is more common in the southern coastal areas in China, such as the Hainan Province, an area with a relatively high incidence. Mild forms of thalassemia trait don't need treatment. For intermediate and major forms, treatments normally include blood transfusions and chelation therapy to remove excess iron. Hematopoietic stem cell transplantation (HSCT), which represents the only cure for patients with thalassemia, yet often keeps patients’ families away for its prohibitive cost.
Wen Ze is 10 years old this year. When he was three months old, he was examined for his yellow skin tone in the hospital. The results showed that Wen suffered from thalassemia.
Fortunately, they have got medical care minimal assurance reimbursement, support from relatives and friends, and help from the Beijing AngelMom Charity Foundation. "Without their help, we would not be where we are today," said his mother.
According to a survey on the economic burden of thalassemia patients, for a patient from 0 to 20 years old, their family needs to spend 50,000-60,000 yuan on medical expenses every year.
After learning about HSCT (haematopoietic stem cell transplantation), Wen Ze's parents decided to perform the transplant for their child, hoping that he could be cured. But before that, there had been no successful HSCT case in Hainan.
In February 2017, Wen who was more than five years old, underwent the procedure, on which their family spent about 200,000 yuan, with some expenses partially reimbursed. Luckily, the procedure was very successful, now he doesn't need to take any medicine at all.
Thalassemia patients often face a situation of blood supply shortage for which they can’t get treatment. It happened to Wen when he was little, therefore, his parents and one aunt had volunteered to donate blood. They had also asked for help from people living in the same village, even being willing to pay them to donate blood. Yet, due to their lack of awareness of blood donation, these people often refused to do it. Later, at the blood donation station, his mother said that Wen needed stable blood transfusions, hoping to get help. A blood donor happened to hear it, saying that they would donate to him.
There are nearly 800 registered thalassemia patients in Hainan Province, including mild, intermediate, and major forms, 508 of which currently need blood transfusions.
According to incomplete statistics, so far, 141 HSCT procedures have been performed in Hainan Province, of which 140 were successful.
Another patient with severe beta-thalassemia, Song Yuran (pseudonym), is 15 years old. When Yuran was little, the mother tried to boost her child's immunity with a healthy diet and lifestyle, including going to bed early every day and soaking his feet in hot water to treat sinusitis. At present, Yu Ran has the symptoms of an enlarged liver and spleen, and a mild iron overload, for which two iron-removing drugs should be used together to quickly excrete excess iron. In addition to conservative treatment, Song's mother is also waiting for gene therapy, hoping to bring more hope to her child.
Hainan Beatitude Foundation (HBF) currently promotes care for children with thalassemia as the key project. As the project specialist, Fang Ming visits the families of children with thalassemia every week in Hainan, providing living materials to families in need, helping children who are undergoing treatment, and also participating in blood donation, and proposing blood donation initiatives.
"I joined the thalassemia project four months ago on April 28..." Fang said.
However, after Fang started leading the project, in May and June, he cried several times. Some parents thought he was a fraud trying to sell medicines to them. Once, on their way to some activities outside of Hainan, after learning that he was working on a thalassemia project Fang Ming’s friend asked: Are you nuts? Such projects won’t make money. Why do you do it...
During the visits, the living situation of the thalassemia children and their families touched his heart. One family especially has financial difficulties. The husband, blind, and the wife suffering from polio, are both in their 30s. Their two boys both have thalassemia and the grandfather is paralyzed. Only the grandmother raises pigs to support the family which also receives a monthly subsistence allowance of 1,200 yuan. "If the husband has the opportunity to learn massage skills, he can earn two or three thousand yuan per month to support his family. But without anyone teaching him, he will not be able to provide for the family. In this case, what would happen to the two children?" Fang feels very worried after learning about it.
A few days ago, when visiting a family with a thalassemia patient, he found that the child was severely anemic, so he urged the parents to take the child to the hospital quickly. At the hospital, the test result showed that the patient’s hemoglobin was only 29g/L, which meant that the child might have a life-threatening cardiac arrest in two or three days without proper medical care.
According to medical procedures, men with hemoglobin below 90g/L must have blood transfusions. The Provincial Blood Center has made an unwritten rule due to blood supply shortage, that children with thalassemia can only have blood transfusions if their hemoglobin is lower than 60g/L.
Before knowing people with thalassemia, Fang had been an active blood donor, having donated blood nearly 40 times for free. During the epidemic, blood supplies were extremely scarce. Then, he went to donate blood on August 30, calling on those who could do the same to donate blood once on his Wechat Moments.
It is reported that the thalassemia gene itself is not bad. In tropical and subtropical climates, the thalassemia gene is an inherited protective mechanism that protects people from malaria to some extent. But if both husband and wife carry the same type of thalassemia gene, it is possible to have a child with thalassemia major. As long as the encounter between two thalassemia genes of the same type is avoided, the birth of thalassemia children can be prevented.
Most families with thalassemia patients are socially disadvantaged groups, lacking medical knowledge and awareness of pre-pregnancy and prenatal examinations.
Fang Ming and volunteers plan to organize medical experts to help rural grassroots doctors know better about thalassemia, so as to help rural women of childbearing age have early examinations and awareness, reducing the birth of thalassemia children.
- Translated by Shuya Wang
海南省计划到2030年实现地贫零出生和零遗漏。经过四个月的探访和调研，方明（一地贫项目专员）认为，只要社会各方共同努力，是完全可以达成这个目标的。
地中海贫血（简称“地贫”）是一种遗传性血液系统疾病，在我国多见于南方沿海地区，其中，海南省是发病率比较高的地区。轻型地贫无需特殊治疗，中间型和重型地贫一般采用输血和去铁治疗，通过造血干细胞移植可根治。造血干细胞移植手术费用高昂，往往令普通的地贫家庭望而却步。
一个炎热的晌午，海南八福公益基金会的三名工作人员一行来到与文泽妈妈约定的地点见面。
文泽今年10岁，在他三个月大的时候，肤色偏黄一次去医院检查，结果显示文泽患有地贫。
好在有低保报销、亲戚朋友的援手，以及天使妈妈慈善基金会的帮助，“如果没有他们的帮助，我们也走不到今天。”文泽妈妈说。
据一项地贫患者经济负担方面的调查研究，一个地贫患者从0岁到20岁，其家庭每年需要负担5-6万元的医药费。
在了解了造血干细胞移植手术之后，文泽的父母决定要给孩子做这个移植手术，希望孩子的地贫能够得到根治。但是在那之前，海南还没有造血干细胞移植成功的先例。
2017年2月份，5岁多的文泽做了手术。报销之后，他们家庭花费的部分大概有20万元。所幸的是，文泽的移植手术非常成功，现在文泽已经完全不用吃药了。
对于地贫患者而言，常常会面临血荒而无血可输的状况。文泽小的时候，血源也是很紧张。文泽的爸爸妈妈和姑姑曾经主动要去献血。他们也求助村里人，甚至愿意出钱请人去献血，但是由于对献血的认知不足，这些人往往拒绝献血。后来，文泽妈妈在献血站说了孩子需要稳定输血的情况，希望得到帮助，刚好有个献血者听到了，就说要把自己献的血给文泽用。
海南省有将近800个在册的地贫患者，包括轻型、中间型和重型，当前需要输血的地贫患者有508个。
据不完全统计，截至目前为止，海南省内已进行了141例造血干细胞移植手术，其中140例移植成功。
另外一名重型β地贫症患者宋羽然（化名），今年15岁，在羽然小的时候宋妈妈就通过饮食起居来提高孩子的抵抗力和免疫力。每天早睡，并且泡脚来治鼻窦炎。目前羽然的肝脾已经偏大，还有轻微沉积，这种情况需要两种除铁药联用强排。除了保守治疗，宋妈妈也在等待基因治疗，希望以此给孩子带去更多希望。
海南八福公益基金会（简称“八福”）目前推进的重点项目就是关爱地贫患儿，作为地贫项目专员，方明每周都会到海南各地探访地贫患儿家庭。为困难家庭送上生活物资；为正在进行治疗的患儿提供帮助；也参与献血，发出献血倡议等。
“我是从4月28号开始做地贫项目的，到现在四个月了……”
但是，自从开始负责地贫项目，5月和6月两个月，他哭了好几次。其中有的家长认为他是卖药的、骗子。有一次，方明和朋友自驾去外地参加活动，朋友得知他在做地贫项目，问：你吃饱撑的啊？地贫项目又没什么钱，你整那干啥……
在探访过程中，地贫患儿及其家庭的情况无不触动着方明的心。 有个地贫患儿的家庭，比较艰难。夫妻二人都是80后，丈夫是个盲人，妻子是小儿麻痹症，生了两个男孩儿，都是地贫患儿。爷爷现在也瘫痪了，奶奶养猪。一家人每月领低保补助金1200元。“丈夫如果有机会学习盲人按摩技能，他也能赚个两三千块钱，也能养家。没有人教的话，他就不能给家庭创造财富，这样的话，两个孩子怎么养？”方明了解了这个家庭的情况后，都觉得很发愁。
前些日子，方明又去探访一个地贫家庭，到了之后发现患儿已经贫血很严重了，就催父母赶紧带孩子去医院。到了医院，一查血红蛋白只有29g/L。如果再晚去两三天的话，就有可能心脏骤停，危及生命了。
据悉，男性血红蛋白低于90g/L必须要输血。省血液中心在血液超吃紧的情况下做出无奈的不成文的规定，地贫患儿的血红蛋白低于60g/L才能输血。
在接触地贫群体之前，方明就是一名积极献血者，已经无偿献血近40次。疫情期间血源极度缺乏，方明8月30号去献了血，并在朋友圈呼吁有条件献血的人伸出援助之手，献上一次血。
据悉，地贫基因本身并不是坏的，在热带亚热带气候中，地贫基因是一种遗传性的保护机制，在某种程度上可以保护人们更少地受到疟疾的侵害。但是如果夫妻双方携带相同类型的地贫基因，就有可能生出一个重型地贫的孩子。只要避免两个同型的地贫基因相遇，就能防控地贫儿的诞生。
而大部分地贫家庭都是社会弱势群体，缺乏健康知识，缺乏孕前孕后检查的知识。
方明和志愿者们计划组织专家医生向乡村基层医生宣讲地贫知识，从而帮助乡村育龄妇女早检早知，减少地贫儿的出生。
“八福”地贫项目方明：2030年地贫零出生目标有望实现
Hainan Province plans to achieve zero-inherited births and zero omitted cases in thalassemia by 2030. After four months of visitation and research, Fang Ming, a thalassemia project specialist from Hainan Beatitudes Foundation, believes that as long as all parties in society work together, this goal can be achieved.
Thalassemia, an inherited blood disorder, is more common in the southern coastal areas in China, such as the Hainan Province, an area with a relatively high incidence. Mild forms of thalassemia trait don't need treatment. For intermediate and major forms, treatments normally include blood transfusions and chelation therapy to remove excess iron. Hematopoietic stem cell transplantation (HSCT), which represents the only cure for patients with thalassemia, yet often keeps patients’ families away for its prohibitive cost.
Wen Ze is 10 years old this year. When he was three months old, he was examined for his yellow skin tone in the hospital. The results showed that Wen suffered from thalassemia.
Fortunately, they have got medical care minimal assurance reimbursement, support from relatives and friends, and help from the Beijing AngelMom Charity Foundation. "Without their help, we would not be where we are today," said his mother.
According to a survey on the economic burden of thalassemia patients, for a patient from 0 to 20 years old, their family needs to spend 50,000-60,000 yuan on medical expenses every year.
After learning about HSCT (haematopoietic stem cell transplantation), Wen Ze's parents decided to perform the transplant for their child, hoping that he could be cured. But before that, there had been no successful HSCT case in Hainan.
In February 2017, Wen who was more than five years old, underwent the procedure, on which their family spent about 200,000 yuan, with some expenses partially reimbursed. Luckily, the procedure was very successful, now he doesn't need to take any medicine at all.
Thalassemia patients often face a situation of blood supply shortage for which they can’t get treatment. It happened to Wen when he was little, therefore, his parents and one aunt had volunteered to donate blood. They had also asked for help from people living in the same village, even being willing to pay them to donate blood. Yet, due to their lack of awareness of blood donation, these people often refused to do it. Later, at the blood donation station, his mother said that Wen needed stable blood transfusions, hoping to get help. A blood donor happened to hear it, saying that they would donate to him.
There are nearly 800 registered thalassemia patients in Hainan Province, including mild, intermediate, and major forms, 508 of which currently need blood transfusions.
According to incomplete statistics, so far, 141 HSCT procedures have been performed in Hainan Province, of which 140 were successful.
Another patient with severe beta-thalassemia, Song Yuran (pseudonym), is 15 years old. When Yuran was little, the mother tried to boost her child's immunity with a healthy diet and lifestyle, including going to bed early every day and soaking his feet in hot water to treat sinusitis. At present, Yu Ran has the symptoms of an enlarged liver and spleen, and a mild iron overload, for which two iron-removing drugs should be used together to quickly excrete excess iron. In addition to conservative treatment, Song's mother is also waiting for gene therapy, hoping to bring more hope to her child.
Hainan Beatitude Foundation (HBF) currently promotes care for children with thalassemia as the key project. As the project specialist, Fang Ming visits the families of children with thalassemia every week in Hainan, providing living materials to families in need, helping children who are undergoing treatment, and also participating in blood donation, and proposing blood donation initiatives.
"I joined the thalassemia project four months ago on April 28..." Fang said.
However, after Fang started leading the project, in May and June, he cried several times. Some parents thought he was a fraud trying to sell medicines to them. Once, on their way to some activities outside of Hainan, after learning that he was working on a thalassemia project Fang Ming’s friend asked: Are you nuts? Such projects won’t make money. Why do you do it...
During the visits, the living situation of the thalassemia children and their families touched his heart. One family especially has financial difficulties. The husband, blind, and the wife suffering from polio, are both in their 30s. Their two boys both have thalassemia and the grandfather is paralyzed. Only the grandmother raises pigs to support the family which also receives a monthly subsistence allowance of 1,200 yuan. "If the husband has the opportunity to learn massage skills, he can earn two or three thousand yuan per month to support his family. But without anyone teaching him, he will not be able to provide for the family. In this case, what would happen to the two children?" Fang feels very worried after learning about it.
A few days ago, when visiting a family with a thalassemia patient, he found that the child was severely anemic, so he urged the parents to take the child to the hospital quickly. At the hospital, the test result showed that the patient’s hemoglobin was only 29g/L, which meant that the child might have a life-threatening cardiac arrest in two or three days without proper medical care.
According to medical procedures, men with hemoglobin below 90g/L must have blood transfusions. The Provincial Blood Center has made an unwritten rule due to blood supply shortage, that children with thalassemia can only have blood transfusions if their hemoglobin is lower than 60g/L.
Before knowing people with thalassemia, Fang had been an active blood donor, having donated blood nearly 40 times for free. During the epidemic, blood supplies were extremely scarce. Then, he went to donate blood on August 30, calling on those who could do the same to donate blood once on his Wechat Moments.
It is reported that the thalassemia gene itself is not bad. In tropical and subtropical climates, the thalassemia gene is an inherited protective mechanism that protects people from malaria to some extent. But if both husband and wife carry the same type of thalassemia gene, it is possible to have a child with thalassemia major. As long as the encounter between two thalassemia genes of the same type is avoided, the birth of thalassemia children can be prevented.
Most families with thalassemia patients are socially disadvantaged groups, lacking medical knowledge and awareness of pre-pregnancy and prenatal examinations.
Fang Ming and volunteers plan to organize medical experts to help rural grassroots doctors know better about thalassemia, so as to help rural women of childbearing age have early examinations and awareness, reducing the birth of thalassemia children.
- Translated by Shuya Wang
Beatitudes Foundation: Hainan Province Aims for Zero-inherited Thalassemia Births by 2030
