Editor’s note: At this year’s two sessions, Premier Wen Jiabao said that we should persevere in our efforts to give all people a sense of security for the elderly, medical care and housing. Among them, medical and health services are listed in the second place.
For the majority of ethnic areas, “difficult to see a doctor, expensive to see a doctor” is a long-standing problem. The goal of equalizing public health services is even more difficult to achieve due to the harsh natural environment, scattered living conditions, and backward medical and health conditions. There is still a long way to go to make up for the “short board” of health care in ethnic areas, so that the people can really realize “medical care is not a dream”.
What’s more worrying is that, because there are few channels for voices to be heard in ethnic areas, many of their needs are ignored: what achievements have been made in health care in ethnic areas, what difficulties still exist, and what help is needed? We look forward to doing what we can to salvage their “sunken” voices through the platform of this newspaper.
Highland area is a high prevalence of precocious heart disease
Reporter: In May this year, you participated in the “Chinese Family” campaign organized by the National People’s Committee and the First Hospital of Tsinghua University, and conducted a screening for precocious heart disease in Diqing, Yunnan.
Doctor: Due to the limitation of local medical equipment, we conducted a rapid screening of precocious heart disease using qualitative diagnosis such as auscultation and physical examination. 22 cases were diagnosed, of which 7 cases were examined in our hospital, and 6 cases were operated except one case which was suspended due to pulmonary hypertension.
Reporter: Medically speaking, are the screening results higher than in the plain areas?
Doctor: Yes, the average altitude of Diqing is above 3500 meters, which is a high prevalence area for precardiac disease. Medically speaking, the causes of precordial disease are very complex, with multiple factors such as genetic and environmental influences. However, it is generally accepted in the medical community that high altitude has an effect on fetal heart development. This conclusion has been confirmed in other plateau areas of China, such as Tibet, Sichuan Tibetan area and Qinghai.
Highland precordial disease is mainly simple type
Reporter: According to your observation, what are the main types of plateau precocious heart disease?
Doctor: In our screening results, simple precocious heart disease is the main type, namely atrial septal defect (“atrial defect”), ventricular septal defect (“ventricular defect”) and arteriovenous ductus arteriosus.
Reporter: What is the main form of treatment for simple precordial disease? What is the best time for treatment?
Doctor: There are two types of treatment for simple precordial disease: open-heart surgery and interventional minimally invasive surgery. Among the patients this time, Pan Mei and Lu Rong are “atrial defect” and “ventricular defect” respectively, so they underwent open-heart surgery; Ma Shunying has an unclosed arterial duct, so she underwent interventional minimally invasive surgery.
Medically speaking, the best time for treatment depends on the patient’s condition, but in general, the earlier the better. For simple precordial disease, if the surgery can be performed within 3 years of age, the patient will be exactly the same as a normal person after healing.
Reporter: What are the consequences if the best time for treatment is missed?
Doctor: Patients with precordial disease may develop pulmonary hypertension after a certain age. Severe pulmonary hypertension can cause right heart insufficiency, followed by a series of reactions such as left heart insufficiency, right heart failure, left heart failure and loss of work capacity. The most severe cases can lead to Eisenmenger syndrome, in which the blood shifts from the original left-to-right shunt to a right-to-left shunt, in which case the opportunity for surgery is lost and only a combined heart-lung transplant can be done. Therefore, medical science advocates early prevention, early detection and early treatment for precordial disease.
Reporter: What is the average cost of treatment for simple precordial disease? Some patients hear that it costs at least 60,000 or 70,000 yuan, or even 100,000 yuan, so they are afraid to ask for it.
Doctor: This is a misconception. According to our hospital pricing, the average cost of treatment for simple precordial disease is usually 30,000 or 40,000 yuan.
Heart ultrasound during pregnancy can screen for precocious heart disease
Reporter: Can current medical conditions prevent precocious heart disease in advance?
Doctor: The most effective form of prevention now is fetal heart ultrasound. Pregnant women with a family history of the disease at 18 to 25 weeks of pregnancy can go to the hospital for cardiac ultrasound screening. Since this type of ultrasound requires a high level of physicians and equipment, not all hospitals can do it, and you need to go to a hospital that is qualified to diagnose the test.
However, even so, the medical profession cannot guarantee 100% screening, after all, there are two layers of belly, but there are some more obvious symptoms, such as single ventricle, are able to be detected.
Reporter: Is there a direct correlation between the appearance of babies with precordial disease and lifestyle?
Doctor: According to our observation, the correlation is not very big. We have patients from urban and rural areas. Nowadays, a family usually has one child, and they all pay more attention to it, but the incidence of precardiac disease has not decreased, and it may still be the result of a combination of factors.
No more tears for the Lu Rongduzhi
It’s been more than a week since I returned from my interview at the First Hospital of Tsinghua University, but the crystal tears that were quietly hanging on his face were always on my mind.
That day, I had a conversation with him in front of his hospital bed.
”When you were 6 years old, you knew you had a pre-existing heart disease, did you tell your father you wanted to go to the cure?”
”Yes.”
”What did Daddy say in reply?”
”Daddy said he would treat you later.”
”Daddy never had the money to cure you, do you blame Daddy?”
”No.”
When he answered, he always did not hesitate and was firm, and spared words, yet he felt that every word came from his heart.
Finally, I asked him, “What do you wish for after you are cured?” He thought about it and replied, “I wish all the children in the world to be healthy.” This slogan-like wish was so unexpected that I almost couldn’t help but laugh. However, on second thought, what could be more important than health for a child who has been suffering from illness since birth?
After that, he lay quietly on the hospital bed, with something bright shining on his face. It turned out to be a tear that had quietly slipped down his face without my noticing.
It was a tear full of infinite meaning. A 12-year-old child, in the process of struggling with illness, in the process of waiting patiently for money to be raised for treatment, despite learning to do his best to hide his emotions and sadness, still could not stop the tears from coming out when happiness came.
According to Wu Qingyu, president of the First Hospital of Tsinghua University, there are about 150,000 newborn children with precocious heart disease in China every year, and 100,000 of them need treatment, while only about 30,000 can be treated. About 1/3 of the children who cannot be treated in time die within one month after birth, and about 1/5 die within one year after birth. One-third of the patients in ethnic areas do not receive effective medical treatment because of family poverty.
In contrast, Lu Rongduzhi is one of the very few lucky ones. There are many more minority children who do not have the conditions to detect whether they are carrying the “time bomb” of precocious heart disease.
At present, “difficult and expensive to see a doctor” is a common problem across the country. However, this problem is more prominent in ethnic areas. Due to the difficult natural environment, backward medical and health conditions, these areas often become a high incidence of disease, especially some of the main environmental factors affected by endemic diseases, multi-morbidity, a huge impact on the production and life of the people, many people have no money to treat the disease, no place to treat.
At present, for these diseases, in addition to infectious diseases, the state and the relevant departments have not formed a special policy to help, mostly by charitable organizations or private forces sporadic relief. These spontaneous actions, due to the small scale and narrow scope, can only play a demonstration role, but can not solve the widespread problem.
Health is a matter of life and death, a patient’s suffering, touching the heart of a family. People-oriented, first of all, should be people’s health-oriented, looking forward to more endemic diseases in ethnic areas, multi-morbidity of the people’s livelihood policies introduced, so that more Lu Rongdu Zhi no longer silently shed tears.
The road to “mending heart”
The incidence of congenital heart disease (hereafter referred to as “congenital heart disease”) in children is about 4%. The incidence of congenital heart disease is about 4 to 8 percent among children. The incidence rate is 2 to 3 times higher than that of the mainland in high-altitude areas. According to the investigation of the Red Cross in Ali, Tibet Autonomous Region, each year Ali new children with precocious heart disease 30 to 40 people. Currently, there are no less than 800 children with precocious heart disease in the Ali region alone. The same problem is also found in Yunnan Diqing Tibetan Autonomous Prefecture, Qinghai Province, the Tibet Autonomous Region and other highland areas.
The 12-year-old Tibetan boy, Lu Rong Du Zhi, lies in a hospital bed, his thin body curled into a ball, his big eyes clear and bright, his long eyelashes fluttering like butterfly wings.
Although he occasionally coughs, he no longer has to worry about the “time bomb” that lurks in his body – his heart disease.
On the morning of August 3, Lu Ruluduzhi underwent open-heart surgery at the First Affiliated Hospital of Tsinghua University in Beijing (hereinafter referred to as “Tsinghua Annex I”). His life, which had been heavily colored by tragedy since birth, finally began to play a happy tune after three hours of surgery.
It is unimaginable how long it would have taken for this child, born in a poor family, to be relieved of his burden without the support of love. In the words of his father, Zhaxi, he is “so blessed”.
Six years of waiting for the chance to have surgery
The family’s home is in Tacheng Township, Lisu Autonomous County, Dixi, Yunnan Province. With a family of six, two elderly people and two children who are unable to work, the burden of supporting the family falls on Zhaxi and his wife.
The family has a family of six, two elderly and two children who are unable to work, and the burden of supporting the family is on Zhaxi and his wife. Zhaxi thought he had a poor constitution, but did not realize that this was a sign of preexisting heart disease.
Before he started school, he had hardly had any medical checkups and did not know that he had preexisting heart disease. After school, during a routine physical examination at school, the doctor found a murmur in his heart after he was sent to Vichy County Hospital for examination and diagnosed with precardiac disease, which required surgery.
Zhaxi asked around about the cost of surgery, someone said at least 50,000 or 60,000 yuan, his heart was immediately cold. The whole family grows grain, barley, barley, wheat, corn, and collects matsutake mushrooms in summer, and the annual cash income is about 3,000 yuan, so the family can’t get that much money.
In order to save money, Zhaxi raised pigs and cows, saved a little money, and because of the old man’s medical treatment spent all the savings.
The company’s main goal is to provide a solution to the problem. Zhaxi told him each time: “Dad will treat you later.” The child who understands no longer says anything, but secretly often drops tears. Zhaxi knows his son’s suffering, as a father, he cursed himself useless, “too ashamed”.
In March this year, Lu Rong Du Zhi suffered from a hernia, to Shangri-La County for surgery. As anesthesia was to be implemented during the surgery, the doctor gave him a heart ultrasound. The results showed that his precordial disease was already serious and he had to be operated on as soon as possible. The kind doctor asked Zhaxi to leave his phone number, and it was this phone call that allowed Lu Rongduzhi to get a valuable chance for surgery.
From May 16 to 24, the National People’s Committee, in conjunction with Tsinghua University, went to Diqing Prefecture to carry out the “China as a Family” medical campaign, with a high-profile medical team consisting of five specialists from the heart center, obstetrics and gynecology, pediatrics and gastroenterology, and conducted a precocious heart disease screening in Shangri-La County.
Zhaxi received a call from a doctor at Shangri-La County Hospital and immediately took Lu Rong Du Zhi to the site of the screening. The doctor from Beijing quickly diagnosed his condition.
”Rulongduzhi had a large ventricular septal defect (‘ventricular defect’ for short) and, fortunately, some adhesions, so he had no symptoms of pulmonary hypertension and no significant physical discomfort.” said Tang Xiujie, deputy chief physician of cardiac surgery at Tsinghua University, who screened and confirmed the diagnosis for Lu Rongduzhi.
During the screening, the medical team saw more than 700 patients and screened 22 cases of patients with preexisting heart disease, involving Tibetan, Bai, Yi, Lisu and Naxi ethnic minorities.
The Yi girls, Pan Mei and Ma Shunying, were among the beneficiaries of this medical delivery, and when the reporter met them at Tsinghua Annex I on August 9, they were rosy-cheeked, relaxed, chattering and laughing.
According to Qiu Zhihua, principal of Baoshan Primary School in Tiger Leaping Gorge Town, Shangri-La County, Diqing Prefecture, during a routine physical examination at the school last year, the doctor found on auscultation that Pan Mei and Ma Shunying had heart murmurs. Subsequently, the Tiger Leaping Gorge town government joined with the town health center to give a comprehensive physical examination to all 348 students in the school and found that four students suffered from precardiac disease, with a prevalence rate of 11.5 percent. The prevalence rate was 11.5%, which is close to 2 times that of the plain area.
The students’ conditions put a lot of pressure on the teachers. For safety reasons, the school decided not to let them participate in physically demanding classes such as physical education and labor classes. “Ma Shunying liked dancing very much, and the teacher forbade her to dance, which gave her a sense of loss of being inferior everywhere, and she was so depressed that she wanted to drop out of school.” Qiu Zhihua said.
Ma Shunying’s family is in the third team of the Tugan of Baoshan Village, located in the remote alpine region of Tiger Leaping Gorge town, which has only been connected to water and electricity in the past few years, and the only road to the outside world is often blocked by mudslides in the summer. Ma Shunying’s family has four children, and her grandmother and mother both have heart disease, relying on her father to work outside the home to support the family.
”Without outside help, Ma Shunying’s family would not have been able to afford the tens of thousands of yuan in medical bills.” Qiu Zhihua said.
Pan Mei, 12, is affected by a pre-existing heart condition, standing only 135 centimeters tall and weighing 25.5 kilograms, and looks only seven or eight years old. Her family is also in the poor, alpine mountains, and her father suffers from schizophrenia, making her family’s situation even more difficult.
As a school principal, Qiu Zhihua is very worried about his child’s health. He has a 21-year-old distant nephew who suffers from a precocious heart disease and has been unable to afford treatment, carrying it at home. Last year, he had a cold and a cough that lasted for four months. The family could no longer stand by and watch him suffer from the disease, and raised money to take him to the provincial capital, Kunming, for medical treatment. The doctor said that he had developed Eisenmenger syndrome and surgery was not recommended. “A good boy, no longer saved.” Qiu Zhihua lamented.
That’s why when he heard about the “China Family” campaign, he immediately took his four children to be screened and three were diagnosed.
According to the statistics, about 1/3 of the children with precocious heart disease in China lose their chance to be treated due to poverty, and 90% of them can be cured if treated in time.
The “time bomb” buried in the body
When Cui Jian was about to finish his screening for precocious heart disease in Mami Township, Changtse County, Tibet, the staff of the Ali Red Cross came over and said that there were two more suspected cases of patients who had gone up to the mountains to graze their sheep, could they wait a little longer?
Despite the severe plateau reaction, Cui Jian, a doctor in the ultrasound room of Tsinghua Affiliated Heart Center, decided to give those two patients a chance. From Lhasa by cross-country vehicle day and night, it took 27 hours to reach Ali, this journey, Cui Jian witnessed the vast barrenness of Ali, he knows that for the people here, this screening opportunity is very precious.
An hour and a half later, the girls herding sheep – 7-year-old Kelsang Mingchi and 15-year-old Zhuoda were found. They were both diagnosed by a portable ultrasound machine worth millions of dollars, and they were not spared.
From June 3 to 10, the “Heart in Love” project, initiated by Fan Bingbing Studio, organized Cui Jian and colleagues, Dr. Chen Guoliang from the pediatric ward and volunteers, and nine other people to go to Tibet’s Tibetan region of Ali County to conduct screening for precocious heart disease.
In four days, they screened 336 suspected cases and diagnosed 78 children with precocious heart disease, several of whom had significant combined pulmonary hypertension and needed treatment as soon as possible. “This is only one of the six counties in the Ali region incomplete screening. It is evident that the incidence of precardiac disease in the Ali region is quite high.” Cui Jian said.
Ali area average altitude of 4500 meters, is the “plateau of the Tibetan plateau”, “the roof of the roof of the world”. Here is one of the world’s least densely populated areas, more than 300,000 square kilometers of land, only 95,000 people live (six Pu data), the vast majority of farmers and herdsmen. Due to the lack of oxygen on the plateau, the incidence of precocious heart disease than the mainland 2 to 3 times higher. According to the investigation of the Red Cross in Ali region, every year Ali new precocious heart disease children 30 to 40 people, has been found in the precocious heart disease children on no less than 800.
Cui Jian found in the screening, Ali area precocious heart disease children to simple precocious heart disease, with the current medical conditions, only need to perform relatively simple surgery, can be cured.
However, most of the patients with precocious heart disease in Ali, do not have the financial and technical conditions to confirm their disease. Because of poverty, many families, even if they know their children have the disease, they can only let it develop and deteriorate, and leave it to fate.
Most of the medical facilities in the Ali region are old and backward, and it is difficult to detect precocious heart disease and so on. It is understood that only two hospitals in the region have color ultrasound, some children need to ride a horse and ride back and forth for half a month to check. Since there is no portable ultrasound, the screening of heart disease mainly relies on a senior doctor in the region to check with an audiotherapist. Cui Jian saw at the health center in Cangze County, due to the long distance and inconvenient traffic, pregnant women in their eighth and ninth months of pregnancy put up tents in the courtyard early and set up pots and pans, waiting to give birth. The health center had only one delivery bed and one nursery box, no air conditioning, and the cow dung used for heating the hospital walls was blackened.
In the process of screening in Pulan County, Cui Jian also encountered an “unexpected event” – a power outage. After 20 minutes, the local authorities generated emergency power so that the screening could continue.
”Many precardiac patients may have early symptoms of feeding difficulties, wasting, weakness and disease, but will not have obvious heart disease characteristics, if not timely examination, until the teenage discovery, usually appear the symptoms of pulmonary hypertension, when the difficulty of treatment will be greatly increased. The biggest worry is the emergence of Eisenmenger syndrome, for which modern medicine has not yet been able to treat, which is equivalent to a ‘death sentence’, and may lose their lives at any time.” Tang Xiujie said.
Pre-heart disease is like a “time bomb” lurking in the human body, Cui Jian and other volunteers to do screening work, like “demining”. Unfortunately, due to limited manpower and time, only a very few lucky children are able to lift the sword of Damocles hanging over their “hearts”.
Social assistance rounds up their “heart mending dream”
On July 19, when the reporter arrived at the Tsinghua Hospital’s cardiac ward near Jiuxianqiao in Beijing, Ram, 22, was having fun with his daughter, Zorma, in an intimate manner. From time to time, Drolma touched her mother’s face with her little hand and smiled innocently.
At 11 months old, Drolma was very thin, only 67 cm tall and weighing only 7 kg (the average height of a girl at that age is 73.2 cm and the average weight is 9.02 kg), and could not roll over or stand up. At five or six months, due to dry stools, Ram took Choma to the county hospital three times, where the doctor heard and found a heart murmur and recommended a checkup at a large hospital. When the young Ram heard the news, he couldn’t believe it and burst into tears.
Zhuoma’s home is in the South Hanging Group of Xinyang Village, Nixi Township, Shangri-La County, Diqing Prefecture, Yunnan Province. When she heard that a doctor from the “China Family” medical mission was coming for a screening, Ram immediately took Zhuoma to the county hospital. It took them two to three hours to walk to the township government and get on the bus to the county town, which was already in the afternoon. The doctor’s diagnosis was “atrial defect”, which required surgery.
On June 28, Ram took Drolma, accompanied by her grandfather Wang Jie, to Beijing, where she was admitted to the ward of Tsinghua Hospital. Miao Liya, director of the hospital’s development office, had already arranged a bed for them and told them that the surgery was scheduled for the next day.
”Most of these patients from ethnic areas have poor families, and if they have surgery one day earlier, they can be discharged one day earlier, and they will spend less on room and board.” Miao Liya said.
Because of Choma’s young age, Wu Qingyu, president of Tsinghua Affiliated Hospital and an authoritative expert in cardiology, personally operated on Ram. When she talked about Choma’s surgery, she was teary-eyed. Soon, however, she wiped away her tears and revealed a smile. She said that after this surgery, she no longer had to worry about little Drolma’s illness.
This time, for Diqing children with precocious heart disease, in addition to the part of medical insurance can be reimbursed, “House of Love” charity relief fund and “Huaxia Aiyou Charity Fund” to finance the full cost of treatment, the patient only need to pay the round-trip travel expenses and accompanying staff of food and accommodation costs. The patient only needs to pay for the round-trip travel expenses and the accompanying person’s accommodation and food.
On July 19, 15 Tibetan children from the Ali region of Tibet, who were sponsored by the “Heart of Love” project, also underwent surgery. The project, funded by famous artist Fan Bingbing and Hong Kong businessman Li Ka-shing, plans to operate on 60 children this year, and 40 patients have already been operated on.
At present, the problem of precocious heart disease in the plateau has received more and more social attention and assistance. With the help from all walks of life, many patients in Qinghai, Tibet, Yunnan and other plateau areas have been relieved of their diseases through surgery.
However, due to the high incidence of precocious heart disease in the plateau area, the huge population of patients and the treatment cost of tens of thousands of dollars make the scattered donations from the society seem like a drop in the bucket.
According to the information provided by Fan Bingbing studio, at present, “love in the heart” project has many difficulties: first, Ali high altitude. Many medical staff up there, physical discomfort, project advancement and implementation difficulties; second, heart surgery risk is high. Many people are afraid to do; third, the overall cost is high, at present, the project screened out 276 patients with precocious heart disease, the cost of surgery is expected to exceed 12 million; fourth, the screening of the Ali area does not reach full coverage, the actual number may be even larger.
On Aug. 10, Qiu Zhihua, who is about to leave Beijing with the successfully operated Ma Shunying and Pan Mei, still has some regrets in his heart that his Baoshan Primary School, there is still a child who could not go to Beijing for treatment because her family cannot even afford the round-trip travel expenses and accompanying accommodation.
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Social action to save “heart”
In February 2011, “For Our Children – Thousands of Children with Congenital Heart Diseases from Poor Families of Ethnic Minorities”, sponsored by China Charity Federation and organized by China Armed Police General Hospital and China Charity Federation Press Volunteers Charity Promotion Committee, was launched. “The project was launched. The project is in the form of “1+1 Love Relief”, and from 2011, the relief work will be carried out in a planned, batch and targeted manner, striving to provide free surgery and treatment for 1,000 children with congenital heart disease from poor minority families this year.
In May 2011, the “One Heart, One Mind” project was initiated by the China Social Workers Association, the Red Cross Society of China, and the Buchen Group. In early August, more than 300 medical workers from 20 provinces, autonomous regions and municipalities across the country provided public welfare medical services in Lhasa, Shigatse, Shannan, Linzhi, Ali and other places.
◆The “Tibetan Congenital Heart Disease Investigation and Treatment Project”, carried out by the People’s Hospital of Tibet Autonomous Region and Southeast Asia Prayer Foundation, has screened more than 100,000 children in the region for 11 consecutive years since 2000, and has rescued 238 children with congenital heart disease.