Wang Hui, who is in his 20s, probably would not have thought that his tuberculosis is in danger of no drugs available.
In his view, tuberculosis is not terrible, he had heard of the disease, and feel their previous treatment effect is quite good. This is the second time he came to the hospital, more than half a year apart from the last time. But the results of this examination are much more serious than before.
[Why are so many drugs resistant? How can this be treated? I can’t choose all the medicines], the attending doctor and Corey’s colleagues shook their heads while watching the results privately.
When Wang Huigang came to the hospital, there were only two drugs resistant. [If he persisted in taking drugs routinely, he could basically recover and his condition would not deteriorate.]
Sure enough, Wang Hui said that he stopped taking the medicine less than two months ago, because the symptoms were obviously relieved at that time, and he felt almost well.
After reading his examination report, the doctor could not bear to tell him the truth that there was no medicine available.
Comfort him and say: [There may be a very good drug on the market next year, then you can try it and add several existing drugs to form a stronger plan, which may work for you].
After hearing this, Wang Hui felt quite hopeful, [OK, then I’ll go back to my father for money]. What he did not know was that the current situation could no longer be solved by money.
Tuberculosis, an ancient disease neglected by people
When it comes to tuberculosis, people may think of Lu Xun’s time, human blood steamed bread and consumption.
Many people think that tuberculosis has long gone down in history and is far away from themselves. Besides, in China, basically everyone has been vaccinated with BCG vaccine to prevent tuberculosis and there is nothing to be afraid of.
In fact, tuberculosis does not stop getting sick after vaccination like smallpox. BCG vaccine has limited preventive effect on tuberculosis. If it is infected again after cure, it will get sick again.
In addition to the common sensitive tuberculosis before, more and more drug-resistant tuberculosis have emerged.
According to the World Health Organization’s Global Tuberculosis Report 2018, there are an estimated 10 million new cases and 1.6 million deaths from tuberculosis worldwide in 2017. China has 889,000 new cases every year, of which 73,000 are new cases of drug-resistant tuberculosis every year.
Compared with common sensitive tuberculosis, the cure rate of drug-resistant tuberculosis is greatly reduced.
Paula Fujiwara, director of the Science Department of the Lung Health Alliance, once pointed out that [the existing drugs in our country are very effective for common tuberculosis. Patients only need to adhere to standardized treatment, and the cure rate is above 90%.]
However, the 2017 report of the World Health Organization shows that the cure rate of drug-resistant tuberculosis worldwide is only 55%. The low cure rate of drug-resistant tuberculosis is not only due to the lack of effective drugs, but also closely related to irregular or incomplete treatment.
Nie Wenjuan, chief physician of Beijing Chest Hospital, said that whether it is tuberculosis in what, it is necessary to use sufficient amount, sufficient course of treatment and combined drugs to find out and treat it thoroughly, otherwise secondary drug-resistant tuberculosis will easily occur.
According to the degree of drug resistance, drug-resistant tuberculosis is divided into single drug resistance, multi-drug resistance, multi-drug resistance and extensive drug resistance. The later development, the lower the cure rate.
A reader from Clove Garden once left a message saying:
[I have a very thorough understanding of the horror of tuberculosis, so I cooperate very well with the doctor to treat it. I set three alarm clocks every day, take medicine on time and at the same time. I also prepared a notebook to record the situation of taking medicine, drew a form to list several medicines, and ticked them in the morning, middle and evening to ensure that I don’t drop a meal.]
However, what worries people is that there are not a few patients like Wang Hui who stop taking drugs halfway and eventually lead to deterioration of their condition.
Illness is already an economic disaster, and stopping drugs halfway is even worse.
Zhao Jing, who has been working abroad, went back to his hometown for treatment after being diagnosed with tuberculosis and took anti-tuberculosis drugs for the first two months.
After that, because of adverse drug reactions such as nausea and vomiting, and when she heard that there was an old moxibustion doctor in the village who was very severe, and people said that traditional Chinese medicine had no side effects, she stopped all the oral drugs before and began to seek treatment from the old traditional Chinese medicine.
Her attending doctor called several times to follow up and advise, but she did not agree. A few months later, Zhao Jing returned to the hospital for follow-up and found that tuberculosis drug resistance was more serious.
Facing drug-resistant tuberculosis, Zhao Jing still needs at least 24 months of treatment time, which is only an optimistic estimate that everything goes well.
A survey of 169 newly treated tuberculosis patients showed that 52.07% of the patients did not take drugs regularly after discharge, including missing drugs, stopping drugs by themselves and refusing to take drugs.
Irregular medication and random change of treatment programs are especially prominent in rural areas.
Many people in the countryside do not know about the disease at all, Zhao Jing said. [Some people do not understand tuberculosis even if they know it. They cannot evaluate the doctor’s treatment plan. When they feel a little better, they think they do not need to take medicine.]
However, what they do not know is that such behavior will often make their originally poor families even worse.
[For patients with common sensitive tuberculosis, doctors usually choose first-line drugs, which are often referred to as quadruple drugs-isoniazid, rifampicin, pyrazinamide and ethambutol. Generally, a bottle of drugs costs 20 to 30 yuan, plus liver-protecting drugs and various examination fees, which cost about several hundred to several thousand yuan a month], Nie Wenjuan said.
However, once patients develop drug resistance, they can only choose second-line drugs, and the treatment cost and cycle will multiply, with a monthly cost of 5,000 to 6,000 yuan or even as high as tens of thousands of yuan, with a total cost of hundreds of thousands of yuan, far beyond the affordability of ordinary families.
Worse still, high cost does not necessarily bring high curative effect.
Nie Wenjuan came into contact with a 9-year-old patient, Xiao Qing, who had intracranial tuberculosis, the most dangerous type of tuberculosis, in his thin body and was drug resistant.
Nie Wenjuan once made a waist wear for Xiao Qing and encouraged her to say: “So many people care about helping you, so they should go to school well and repay everyone in the future”.
Hearing this, Xiao Qing’s father smiled awkwardly nearby, [Xiao Qing will not go to school after that and will have to come out to work early].
Only then did Nie Wenjuan know that in order to cure his daughter, the rural family sold their house and owed more than 200,000 foreign debts.
Xiao Qing did not even grow up to be able to work to help her family pay their debts. After the second relapse of tuberculosis, she passed away.
The survey shows that more than 50% of TB patients’ families are experiencing [catastrophic health expenditures]. For the families of NCMS patients with low reimbursement level, it is also an [economic earthquake].
Tuberculosis brings patients not only high financial burden and physical pain, but also various obstacles in work and life.
Invisible Discrimination Accompanied by Lonely Therapy Journey
Sometimes, [having tuberculosis] is original sin.
Bai Jie, 33, works as a courier in Shijiazhuang. He was diagnosed with tuberculosis in November 2017 and had a cavity in his lungs. Bai Jie asked the company for sick leave and was hospitalized.
After three months of regular treatment, Bai Jie recovered well and the sputum test showed negative. The doctor told him that he could go to work normally.
Taking the inspection form issued by the hospital, Bai Jie found the unit supervisor and asked him to continue to work, but the leader asked him to suspend his work on the grounds that the express delivery work needed close contact with the crowd.
However, Bai Jie can only continue to take care of himself at home. During this period, he still takes medicine and goes to the hospital regularly for reexamination.
In December 2018, Bai Jie went to have a reexamination again. The attending doctor told him that his tuberculosis had been basically cured and he could stop taking medicine. In addition to his joy, a company dismissal notice was waiting for him.
The express company stopped hiring him because he suffered from tuberculosis, while the dispatching company that signed the contract arranged him to do another more physical unloading job, [I didn’t go because I was physically competent], and then the company dismissed Bai Jie for not arriving at the post after the expiration date.
Nie Wenjuan said that if the patient completes the whole course of treatment and the sputum bacteria continue to be negative, the hospital can issue a certificate for the patient to resume work or study.
Article 30 of China’s Employment Promotion Law stipulates that employers shall not refuse to employ personnel on the grounds that they are carriers of infectious disease pathogens.
However, the reality is that TB patients often have difficulty in obtaining employment.
In Baidu [Tuberculosis Bar], some netizens said that after tuberculosis was cured, they were still rejected by many enterprises on the grounds that they failed the physical examination with the health certificate issued by the hospital.
For Zhang Chao, who studied medicine in Hubei, carrying the label of “tuberculosis patient” is also a lonely and long journey.
In July 2016, Zhang Chao went to Guangdong to work during the summer vacation. He was found to have tuberculosis during the medical examination. Before that, he had not had any symptoms.
After treatment, sputum test was negative in succession, and Zhang Chao returned to school. Zhang Chao took medicine for nearly 2 years and received infusion for 6 months, but he never told his roommate without telling him.
[Although I am sure it was phlegm and yin that returned to school, I still dare not tell them, fearing that they would abandon it].
In order not to affect his studies, he prescribed the medicine from the hospital and gave infusion nearby the school. At first, although he brought the prescription of a large hospital, because he brought his own medicine, including the school infirmary, many hospitals refused him.
Zhang Chao had to ask from hospital to hospital, [I can’t remember how many times I was rejected. Sometimes I think it is better to tell my classmates that it is too uncomfortable for a person to secretly inject fluids].
Ending tuberculosis requires our joint efforts.
March 24 is the annual World Tuberculosis Day. This year’s theme is “Time and tide wait for no man”, emphasizing the urgency of action.
The World Health Organization and its partners have jointly launched an action called “Detect and Treat All Cases to End Tuberculosis”, including expanding prevention and treatment services, promoting the elimination of stigma and discrimination, and ensuring adequate funding.
The termination of tuberculosis certainly requires the joint cooperation of the government, CDC, hospitals and other organizations, but it also requires the efforts of all of us.
According to the data released by the World Health Organization, nearly a quarter of the world’s people are infected with tuberculosis bacteria and are in a latent infection state for a long time (no disease occurs and no disease will be transmitted).
This means that, in addition to the existing tuberculosis patients in our country, one in four of us is latent infected.
In the life of these infected persons, 5% ~ 10% may suffer from tuberculosis. Once they develop active tuberculosis, they will continue to spread to others.
Therefore, in addition to standardized treatment after onset, prevention is also very important, such as:
- Frequent ventilation in the room; When going out, especially in public places, try to wear masks. Adequate sleep, reasonable diet, strengthening exercise, enhancing immunity, etc.
Only through our joint efforts can this infectious disease, which has raged for thousands of years, be completely eliminated.
(Wang Hui, Zhao Jing, Xiao Qing, Bai Jie and Zhang Chao are pseudonyms in this article)