From "falling" to long struggle, they were trapped by HIV. They tried to find "out of the way"

in

The development of treatment is always step by step

Hope to continue to optimize with the healing drugs,

The continuous improvement of policies, can

Let more patients get the choice of better drugs

In 2010, Huang Tao, then 32 years old, was a watershed in life.

That year, he was diagnosed with HIV infection. "The whole person collapsed, sad and desperate, and was unable to deal with this sudden change." Huang Tao on the other side of the phone said that it was more fear of the unknown of the disease at the time.

Now 12 years have passed, and after treatment, Huang Tao's life has slowly returned to the right track. However, in the process of struggling with the virus, his body encountered various "connection effects" that followed, which had a new impact on life.

Huang Tao is one of the epitome of the entire HIV infection group. According to the United Nations AIDS Planning Department, about 38 million people worldwide infected with HIV virus in 2020. The article "The Progress of the Research on HIV/AIDS Popular disease in China" proposed that as of the end of 2020, a total of 1.053 million people in China had infected HIV viruses and reported a total of 351,000 deaths.

AIDS is a kind of infectious disease caused by human immune defect virus (HIV) infection. HIV is a reversal virus that can attack the human immune system. It will attack and destroy the most important CD4+ T lymphocytes in the human immune system. AIDS) patients eventually lost their immune function.

AIDS has no vaccine, and there is no way to cure it. Infected people need to take drugs for a long time to control the virus load in the body, and also strive to "control" their lives.

Professor Zhao Hongxin, Deputy Director of the HIV Diagnosis and Treatment Center of Beijing Diquan Hospital affiliated to the Capital Medical University, has been engaged in AIDS diagnosis and treatment and clinical study of AIDS for more than 20 years. In an interview with China News, she said that about 1 million patients have been treated in the hospital The actual number of patients is more. "It is estimated that there are about 1.25 million existing AIDS infections, which means that there are still more than 200,000 people have not yet discovered."

According to Professor Zhao Hongxin, HIV infection needs long -term medication. Although the current antiviral therapy has saved the lives of many patients, their quality of life is more or less affected, including long -term accumulated drug toxicity and psychological burden of drug toxicity and psychological burden. And the break of inherent living habits.

Sudden "fall"

At the moment of receiving the diagnosis, Huang Tao's heart collapsed. "Although there was no good life plan at the time, it was like a blockbuster bomb. Life was instantly shattered. I don't know where to go in the future." Huang Tao said.

Twelve years ago, Huang Tao found that his body was "abnormal" and went to the hospital to check in the advice of his companion. However, because of the acute infection period, the HIV virus load in his body was not enough to measure, and the process of the result was twists and turns. "At that time, I went to the comprehensive hospital for examination. The hospital's inspection department was delayed to test the results and suggested that I go to the Center for Disease Control and Prevention." Huang Tao said that he had conducted three tests in the Center for Disease Control and Prevention, but the results were still uncertain. Then I did it again before the diagnosis was finally confirmed.

At that time, Huang Tao's understanding of HIV infection was limited to some basic information, and fear and pressure made him unable to get angry. "I will look at other people's every move in particular, and I am afraid of infection. If the roommates who lease the lease have symptoms such as diarrhea, I am worried about it." Huang Tao admitted that his family did not know what he was sick.

Worried that he would leave before his parents and was worried to his roommate ... These anxiety stimulated his nerves every day. In such a highly tense state, Huang Tao was difficult to work normally, and finally he could only choose to leave.

However, staying at home all day did not ease his inner depression, he often insomnia, and his will is very depressed. Inquiring about the knowledge of the disease online, the mixed information of fish has aggravated anxiety. The accumulation of negative emotions and daily accumulation increased the condition in turn, and became a cycle of "shell". Huang Tao seemed to be stuck inside and couldn't move.

Later, Huang Tao gradually found some patients and volunteers who could hold heating, which made him gradually "recover" from the frozen state of despair. Volunteers would remind him what he needed before the inspection, and he would tell him to be careful on the road. Huang Tao said, "This makes me feel that our group is treated equally."

Even so, when facing the news of the death of the patient, he couldn't help but get rid of it. In the patient group, sometimes a patient's friends or relatives and friends will use the patient's account to send "thank you everyone, where is the day and where the cremation is". He bluntly said, "I can't stand this kind of news, I am afraid that the same thing will happen to myself."

"Many young people in the age of 30 in the group of patients. When watching these news, I suddenly felt that the death seemed to be as far away from himself." He paused and said slowly, "People always face unknown things. The most fearful. "

Wang Ke, who works in Beijing, has experienced similar fear. In the second half of 2015, Wang Ke suddenly began to have a fever, and he had no improvement in the hospital for 2 weeks. Such anomalous situation caused the doctor to doubt, so he suggested that he take a blood test and further confirm the condition. From going to the hospital to the diagnosis, the middle is a month of suffering. Earlier, another friend who had been in contact with Wang Ke had been diagnosed. He had guessing in his heart, but when the result really arrived, he suddenly realized his fragility. "At that time, I thought I had this disease, and my life was almost left." In the early days of the diagnosis, Wang Ke lay on the bed at home, and often mood fluctuated with a little fluctuations.

Because the infection was accompanied by pneumonia, the hospital once gave Wang Ke a notice of illness, and someone had to be accompanied. He had to tell the family to his family. That year, his mother spent the Spring Festival with him in the hospital. During the hospitalization, the doctor prescribed antiviral drugs for Wang Ke. Until now, "taking medicine" is still an important composition in his life.

Long fight

For HIV infection, the path of treatment after diagnosis is a long tug -of -war with the virus.

In 1996, Professor He Dadi, a Chinese -American scientist, proposed that a variety of antiviral drugs were combined or sequentially used to treat HIV infection, which was also vividly called "cocktail therapy". In simple terms, patients can inhibit the replication of HIV virus in the body by taking 3 or more antiviral drugs. As a result, HIV infection has gradually transformed from death -derived diseases to prevent and controllable chronic diseases.

my country has officially implemented the "four exemptions and one care" policy since 2004. Anti -virus drugs are provided free of charge for patients with economic difficulties in rural areas and urban and towns. A large number of patients can receive regular treatment.

Most of the free drug treatment is a three -drug plan, and it is often "long -lasting", and some drugs have even traced back to the 1980s. Due to the restrictions on the medical conditions at that time, the drug toxicity is relatively large. For patients who need to use medication for life, toxic and side effects (headache, nausea, gastrointestinal discomfort, liver and kidney function damage, etc.), long -term complications, drug resistance and other issues have become, which has become. "The price must be paid."

Huang Tao has been taking medication for more than a decade. The first use of free antiviral therapy drugs. Although it can play a certain role, it has also brought problems such as rash, hyperlipidemia, liver function damage, dizziness, etc. Until now, it is still still still. Long -term lack of sleep, and the quality of sleep is also extremely poor.

He has tried to replace the medication plan, and the adverse reactions have improved, but hyperlipidemia cannot be reduced. For more than half a year, the weight suddenly soared 40 pounds, even if the exercise had little effect. The surge's weight made him unable to continue to exercise significantly, which once affected the health of the knees and the health of the lumbar spine. "As long as you bow your head, the whole head is particularly heavy, as if the blood poured into the brain at once. Even the movements of the low -headed shoelaces and foot washing have become very difficult for me, and there is a sense of compression to suffocate." Huang Tao recalled the feelings during that time.

Huang Tao's predicament is not an example. "One of the women in my patient, because the nucleoside drugs in antiviral drugs can cause fat atrophy. Her hips, thighs, and calves deform and never dare to wear skirts; and a young patient, only 35 years old It is already severe osteoporosis, two fractures within two years, just like the "little glass man", "Professor Zhao Hongxin said regrettable.

About 2 months ago, Huang Tao began to take innovative single -table dual -drug HIV treatment drugs. Compared with the traditional three -combined treatment plan, this scheme reduces a type of anti -inversion virus drugs and reduces the burden of drugs, but the curative effect is "non -decrease". Huang Tao said that after changing medicine, "indicators of blood lipids, uric acid, and liver function soon returned to normal. And because of the decrease in the type of medication, the psychological burden was much smaller."

"After other people change the treatment plan, they may have diarrhea, fever, etc. I don't feel anything," Huang Tao talked about the experience of changing the medicine. "No feeling, this is the best feeling."

Huang Tao's innovative drug named Dolito (Ramov Dingdoli Laer). "While ensuring the efficacy, we hope that the less the drugs of the drug, the better, and the simpler the medication, the better, this is the goal of the treatment pursuit." Professor Zhao Hongxin added. From this perspective When the gospel comes, this is also in line with the concept of "simplified treatment".

The most direct meaning of "simplified treatment" is the simplification of the medication plan itself. "Domewito's traditional treatment plan reduces a nucleoside drug and reduces the corresponding drug toxic and side effects. At the same time, the curative effect is" no reduction. "Its drug resistance is high, and the interaction with other drugs is very small. It can achieve a considerable effect of a virus load by more than 100 times in 14 days. "Professor Zhao Hongxin introduced that from the perspective of clinical data, whether it was initial treatment (that is, he had not received treatment before) Treatment) HIV infection, after using innovative drugs, has significantly improved in indicators such as decreased bone mass, blood lipids and cholesterol.

Professor Zhao Hongxin also suggested to Wang Ke's proposal for innovation. "I trust Professor Zhao very much. Her suggestions I think there must be no problem." But Wang Ke also admitted that the cost of treatment is the main reason for him to "discourage".

About one month after the diagnosis, Wang Ke started taking free antiviral drugs. It has been 7 years. He has also been troubled by side effects such as dizziness and nausea, insomnia and dreams. "I have also considered changing medicine. After all, the medicine is taken every day, and there is really no good response to side effects." But reality made him have to temporarily dispel the thoughts. Due to the repeated hospitalization after infection, Wang had to resign. After recuperating for more than half a year in his hometown, it was difficult to find it when he returned to Beijing. In the expenses of big cities, the money was stretched out of the treatment, and he had never changed the treatment plan.

"There are not many options for free drugs, and some of them are more expensive at their own expense, and thousands of a month." Wang Ke explained that one of his current expectations is to hope that innovative drugs can be used through medical insurance.

The "simple" future

Dorito (Ramov Dingdoli Laine) was listed in China in June 2021. About 1 month ago, the drug was approved by the State Drug Administration to expand the indications as a complete solution for the treatment of HIV-1 adults who have achieved virus-suppressed HIV-1 adults and adolescents over 12 years old.

Although this drug has been included in the 2021 National Medical Insurance Catalog, there are certain restrictions on the scope of reimbursement. It is not applicable to Huang Tao and Wang Ke who have received other treatment methods.

Last year, I heard that the drug was included in the medical insurance, but when it was only suitable for the patients of the first governance, Wang Ke's heart could not hide the loss. In addition to antiviral drugs, he is also taking liver retention. In his opinion, HIV infected people need to take medicine for life, and some also take various basic diseases. In the long run, the cost of spending on medicine must not be a small number.

Although Huang Tao has used an innovative treatment plan, economic pressure cannot be ignored. During the epidemic, the income was shrinking, and the medical expenses borne by at their own expense were 885 yuan per month. After 3 months, the cost was thousands of yuan. If the medicine is included in the medical insurance, one person eats only more than 900 yuan for 3 months, and the reduction of the burden is obvious.

Ping An Securities Research Report has analyzed that the AIDS free medication policy and medical insurance policy have played an important role in preventing and controlling AIDS in my country, which is the basic demand for guaranteeing the bottom of the pocket. With the improvement of the treatment rate and the enhancement of residential payment capacity, patients pursue more effective, and the demands of safe drugs are becoming stronger. change.

Professor Zhao Hongxin also said that as a doctor, he also hopes that patients with treatment in the future can also be included in the scope of medical insurance reimbursement of innovative drugs as soon as possible. According to her, about 130,000 newly reported infected people each year, only these patients meet the conditions of "first rule". In contrast, the cumulative treatment of AIDS has exceeded 1 million, that is, there are more than 1 million "governance patients", and the demand is obviously greater.

"In the early years, our diagnosis and treatment ability was still very limited. The lack of effective treatment drugs can only be provided to patients to comfort and encourage. Our country can also provide free CD4 cell testing, free virus load testing, etc. Our patient has better treatment plan, and as a doctor, it is more and more confident. With the continuous optimization of treatment drugs and the continuous improvement of policies, it can make more patients get the choice of better drugs. So I often tell patients -persistence is victory. "

Huang Tao and Wang Ke are insisting.

"I have learned to treat this with ordinary heart now, what should I do? The mentality will be much better." Wang Ke shared, "I hope it will be better and better in the future. I hope that one day this disease can be completely cured by this disease. ","

When asked about the message to other patients, Huang Tao admitted: "Don't think that if you are infected, everything will change, and don't blame God's injustice. This disease is completely preventable and controlled. Don't label yourself and establish correctly The concept and active treatment, we can still return to the original life, as good as the original ourselves. "

*The patients appearing in this article are pseudonym.

Author: Ling Wei

Edit: Cai Rupeng

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