Recalling the dark days of 8 years ago, Xue Rui subconsciously grabbed the temple.
Dizziness, nausea, vomiting, and side effects of the drug continue to invade. Lying in bed, like being in the center of a whirlpool, falling down.
Falling into the whirlpool together, and his life.
Half a year ago, after two nights of different shades of HIV on test paper, after a night, Xue Rui went straight to the CDC, took blood, tested, and waited for the cold data on the report sheet to make a verdict. .
In China, there are 80,000 new people who are HIV-positive like him.
Benefiting from the current policy, they can receive antiviral drugs for life and maintain their lives for free. However, the national free drug list has been in use for more than ten years, and the side effects of drugs have accumulated over the years, which has been unable to meet the needs of all patients.
They buy new drugs with less side effects from Thailand, India and South Africa at a price of 1/5 or even 1/10 domestic.
In the meantime, some people were defrauded of drugs and some people bought fake drugs. They are hoping for policy adjustments and getting out of the dilemma of medication.
AIDS patients who buy drugs across borders: the drug price difference is nearly 7 times. Some people are cheated to buy fake drugs.
Xue Rui bought rivivweilin and Trouvada from Thailand. Beijing News reporter Hou Shaoqing photo
Infected person destroyed by drugs
Before deciding to receive treatment, Xue Rui got a fake sick leave from the Internet. He does not want his colleagues to know who they are infected with.
Like the preparation of a cocktail, the combination of three antiviral drugs, blocking HIV replication, and keeping the number of viruses at a very low or even undetectable level, such "cocktail therapy" is now the mainstream of AIDS treatment.
There are 8 kinds of free drugs in the country, and the combination of “Tirai” is the first choice, namely tenofovir, lamivudine and efavirenz. Three small thumb-sized drugs, taken 24 hours a day, are taken for life, which is also known as first-line drugs.
But at the time, Xue Rui did not meet the free conditions. Different from the present, in the past, only those infected with "small 4" and less than 200 can receive free treatment. He has more than 400.
"Small 4", the scientific name CD4, is an immune cell in the human immune system and a key target of the HIV virus. As an indicator of whether the immune system is functioning properly, the number of normal human CD4 cells is between 500 and 1600 per cubic millimeter, and the number of people living with HIV is usually less than 500.
Under the recommendation of the patient, Xue Rui has locked in a mixture made in the United States, which integrates the three components of "Tirai" into one tablet.
It was also since then that the neurological side effects of efavirenz began to invade.
"Take a few more days to see, just take medicine is like this." In the friend's comfort, Xue Rui continued to be patient. Some people have passed the initial adaptation period, the reaction is no longer intense, and some people's bodies are always confronted and unable to adapt.
He is the latter. One day, two days, one month, two months, there is no sign of improvement.
If you don't come to bed, you can't do anything else, just lie down and think. When I was in the most collapse, I wanted to die. "I met some people later. They talked about their own experiences. I am especially empathetic."
After two months, he was almost carried on a plane by a friend. After 5 hours, landed in Bangkok, Thailand. At Bangkok Kangmin International Hospital, Xue Rui complied with the doctor's advice and replaced the drug with rivivirin and Truvada, which were not listed at the time.
The effect of dressing change was immediate, and the sense of dizziness disappeared.
It was destroyed by efavirenz, and Liu Chang. He started antiviral treatment in 2008, and the free "Tirai" combination is 11 years.
The side effects of the drug accumulated over the years and finally broke out. Insomnia, multiple dreams, memory loss, unable to walk straight, more obvious is the change of emotions, anxiety, depression, loss of all interest, and even appetite, "then I feel that eating is superfluous, life is particularly boring every day." Liu Chang tone Low.
Going around for medical treatment, according to depression treatment, there is no improvement. The company that has been operating for many years is also unable to support, and he is unemployed.
I have heard about the side effects of efavirenz, but it happened to myself, and Liu Changquan was unconscious. Until, he reunited with Chen Guo, an old friend who had not seen for many years and the founder of an AIDS public welfare organization.
"Just judged two people." Seeing Liu Chang again, Chen Guo is unbelievable. The person in front of him is described as dry and dejected, and cannot overlap with the image of the sun in memory.
"You try to replace efavirenz with livreline." A similar situation has been seen, Chen Guo was keenly aware of the problem.
Liu Chang listened to the advice and found the purchase of rivivweilin. After the dressing change, hunger rushed to the surface, and the idea of living a good life began to rise.
Fitness, swimming, singing, playing music... Speaking of the current state of life, Liu Chang has a light tone. "It can be too busy now, and the time is not enough."
No one knows how many AIDS people buy drugs across borders.
At the end of last year, Chen Guo’s nonprofit organization launched an online survey. Nearly 30% of the 624 respondents who have or intend to use their own medicines choose to go abroad or purchase drugs.
There is only one 5,000 people living with HIV in China, and there are more than 5,000 people living with HIV in China. This is the number that the hospital staff told Chen Guo two years ago. The hospital is specially equipped with Chinese translators for this purpose.
This hospital is also the first choice for Chinese infected people to go abroad to see a doctor and buy medicine. When you have more time, you can take medicine and take a trip in Thailand. When you have time, find a weekend trip.
AIDS patients need to regularly check HIV viral load, CD4 and other physical indicators to determine the effectiveness of antiviral treatment. Kangmin Hospital is open for testing every Tuesday, Thursday and Saturday. On Friday, the "red-eye flight" flew to Thailand, tested on Saturday morning, the results in the afternoon, see the doctor, take the medicine, fly back at night.
For the first visit, the doctor can only take a maximum of 3 to 6 months, but after 2 years of follow-up, you can take up to 1 year of medication. One year is enough.
Some people have also tested in domestic designated hospitals and only go abroad to buy medicines. The Bangkok Red Cross clinic in Bangkok and the chain pharmacy in New Delhi, India, are major destinations.
There are still people in the country to detect, looking for a drug to buy. Purchasing does not require a doctor's prescription, nor does it require a medical report. There are different versions of the same drug, the original factory produces the original drug sold in Thailand, South Africa, or the generic drug produced by a local Indian company. How to choose, the patient to grasp.
In the purchase of "sugar sugar", Tweekai, 绥美凯, and Jiefukang are three new drugs, which are the top three sales.
In the past 10 years, AIDS drugs have been innovated globally, and new drugs have been introduced and entered China. Compared with the old drugs, the new drugs have fewer side effects, and the tablets are small in size and easy to swallow. They are the best-selling products on the purchasing market.
Old drugs also have a place, such as rivivirin. The patient used it to replace efavirenz in the national free medicine to reduce side effects.
New drugs that have not yet been listed in China are also circulating in the purchasing market. When the reporter consulted as a patient, “Sugar Sugar” actively recommended a new drug, Kexifu, which has not yet been listed in China.
AIDS patients who buy drugs across borders: the drug price difference is nearly 7 times. Some people are cheated to buy fake drugs.
Blue pill Trouvada. Beijing News reporter Hou Shaoqing photo
400 yuan vs2880 yuan
The biggest driving force for buying drugs across borders is lower prices.
The advantages of the new drugs are clear and the disadvantages are equally obvious – expensive. To use new drugs, you can only pay for yourself. In Chen Guo’s observation, for some patients, the self-paying drug is the only option. They may not be able to withstand the side effects of free medicine or become resistant to free medicines.
“Thousands a month, like a suite.” In front of expensive self-funded drugs, they turned their attention to Thailand, India and even South Africa, where drug prices are extremely low.
Take Yan Meikai as an example, the domestic bottle of 2880 yuan, one month dose. The original research drugs in Thailand and South Africa are 1,250 yuan per bottle, and the Indian version of generic drugs is around 400 yuan.
Even if you travel to Thailand or India in person, it is not too laborious. The off-season ticket price is cheap, more than 2,000 yuan to and from Bangkok, less than the price of a bottle of 绥美凯.
India’s low-cost generics are derived from a unique “compulsory license” policy.
In general, a pharmaceutical company that develops new drugs can enjoy a patent protection period ranging from 10 to 20 years, and drugs are often priced quite high. However, India’s “compulsory license” stipulates that when people can’t afford high-priced patented drugs, they can be directly copied if the patent protection period is over.
Low-cost medicines in Thailand and South Africa benefit from aid from developed countries.
Wu Hao, director of the Infectious Diseases Department of Beijing You'an Hospital, said that for example, Tweed, the recipient country can buy at a low price of 150 US dollars a year, about 900 yuan. But in China, the price is 1980 yuan per bottle, and it costs more than 20,000 yuan a year.
Wu Hao explained that several well-known pharmaceutical companies around the world have generally adopted an aid strategy. For the newly developed AIDS, tuberculosis, hepatitis and malaria drugs, the company will transfer free patents to companies willing to produce. The drugs produced are then available at low prices to 110 developing countries around the world.
However, China is not receiving assistance, although several pharmaceutical manufacturers in Shanghai and other places are commissioned factories for some drugs.
In some remote areas, cross-border drug purchases are more like “just need”. Due to regional differences in medical conditions, new drugs are still difficult to find in the local area.
Chen Guo’s non-profit organization covers more than 20,000 patients in different parts of the country. More than one patient has “spitted” him to buy new drugs in the local area. “Some doctors don’t even know what Meikai is, can ask them. Do you prescribe?"
The hospital did not know the hospital’s behavior in private. For some doctors, this is a taboo topic, "it is illegal." Some doctors have quietly plugged the contact information of nonprofit organizations to patients, hoping that they will find a safe channel for purchasing medicines.
They made the same decision before a similar and different dilemma. "If there is a better way, they will not do this." Chen Guo said.
Out of order purchase
Such a drug circulation market, like a dark river, is secret and disorderly. Until last year, the movie "I am not a drug god" was released.
No one in this circle calls himself a "medicine god." Say something nice, called purchasing, not good to listen to the drug dealer, "pour medicine."
On the day of meeting with Yang Le, the media called the Dalian version of the "drug god case" of the second trial of the purchase case.
"A few years?" He did not raise his eyes, took a sip of coffee, and asked casually. Yang Le was once a member of the purchasing army and has now "goed ashore."
He vaguely felt that after the film was released, the drug dealers became more numerous.
What followed was that the purchasing team became more and more mixed.
Finding a purchase is not difficult. In Baidu Post Bar, a lot of purchases are mixed among the patients, leaving messages and taking the opportunity to sell.
First register a large fake patient, saying that the body of the free medicine has become very bad, and then use the trumpet to follow the post, suggesting that you can purchase imported drugs.
"There are a lot of drug dealers who pretend to be bar friends to promote purchasing drugs." The administrator's prompt, hanging in the conspicuous position of the post.
Still someone is fooled.
A patient in the post got to know the purchase of "egg and egg dolls", and gradually transferred 4,560 yuan to the other party through WeChat, but the other party did not ship the goods, and then found that they had been blacked out by the other party.
This kind of deceived experience does not happen to a patient. However, due to concerns about privacy, few people have reported to the police.
Xue Rui’s friends were also recruited. Purchasing was a stranger in the forum. More than 3,000 pieces of medicines were transferred to WeChat, and they were blacked out.
Worse than being cheated, it is to buy fake medicine. The administrator has exposed a case: a patient has eaten a purchasing medicine, and the number of viruses does not fall. The tablets are sent for testing, and there is no anti-viral component at all, which is an medicine for improving immunity.
"The anti-AIDS drugs that flow out of foreign countries are very small, and it is destined that only a small number of patients can buy them. There may be a risk of buying fake drugs." Wu Hao reminded.
The risk does not stop there in one place. “Cocktail Therapy” has no pause button and will require lifelong treatment once activated. Whether or not the medication can be taken on time and in strict accordance with the amount determines the success or failure of treatment. But the drug at your fingertips brings uncertainty to the treatment.
Someone left the doctor's advice and stopped taking drugs and changing medicines. Near the Spring Festival of 2018, a patient is on a tight schedule, preparing for a temporary “consumption downgrade” and taking a cheaper medicine for a while.
There are people who follow suit blindly. Some patients asked Xue Rui, I heard that the United States has added a new medicine, I want to change the medicine. Xue Rui has some helplessness. "AIDS drugs are not electronic products. There is no need to pursue the latest models. It is the best for you."
"Frequent dressing changes, the worst result is resistance to all drugs, and finally no medicine available." Wu Hao said.
Free or enter medical insurance
After 34 years of AIDS, China estimates that there are nearly 1.25 million people living with HIV.
There are 9 out of every 10,000 people.
In the past 10 years, China has invested a lot of resources in AIDS prevention and control. Providing free treatments for infected people is a very substantial expense.
In 2016, the threshold for the acceptance of free treatment by Xue Rui, the numerical limit of CD4, was cancelled. Under the concept of “discovery is treatment”, no matter how many new CD4 infected people are found, they can receive free treatment immediately.
Anti-Ai Ai drugs can now accelerate into China through the “green channel” of the national drug regulatory authorities.
Health insurance has also opened the door to AIDS drugs. In 2017, Liu Chang and Xue Rui long-term use of rivivirin (Chinese name: En Lin) was included in the national health insurance. After the medical insurance reimbursement, ripivylene reduced from 1200 yuan per box to a minimum of 100 yuan, which is almost the same as the price of 80 yuan in Thailand.
But this is only the beginning. For most patients, it is still unknown when they can buy Medicare. Two years later, only patients in a few cities such as Beijing, Tianjin, Shanghai, Hangzhou, and Shenzhen can buy rivivirin with medical insurance. Henan, Yunnan and other areas with high incidence of AIDS have not been included in medical insurance.
In the cities that have already landed, not all hospitals have the enthusiasm to advance. Taking Beijing as an example, among the four designated hospitals for AIDS treatment, only rivieriline can be purchased with medical insurance at You'an Hospital.
Fixed point, also means binding. Those who have previously chosen to be treated at the Ditan Hospital can no longer go to You'an Hospital to purchase rivivirin with medical insurance.
In addition to these, patients have deeper considerations: because society's discrimination against AIDS, combined with the occurrence of privacy leaks, the use of medical insurance to take medicine, will leave a record, fear of exposure.
These patients are powerless, and they are interlocking. They have pinned their hopes on the "freezing" national free drug list - since 2007, this catalog has not been adjusted, except for drugs such as stavudine, which has serious side effects.
For them, revising the free drug list and adding more new drugs is the most ideal result.
"In the past when resources were scarce, free medicine was our only straw and lifeline." Liu Chang was the beneficiary of the free drug policy, but as time went by, the side effects of drugs gradually became more prominent and could no longer meet the needs of all patients.
The number of people in this segment may increase. "With the promotion of life-long antiviral therapy and the aging of the patient population, the problem of toxic and side effects of antiviral therapy will become increasingly prominent." At an AIDS public health salon last year, Sun Lijun, director of the STD/AIDS clinic in Beijing You'an Hospital, made a speech. sincere.
"If the national free drug list can be adjusted in time to meet the drug needs of groups with obvious side effects, it is considered to be advancing with the times." Liu Chang thought.
But Chen Guo believes that this may be too difficult for the government.
An expert from the National AIDS Treatment Expert Group revealed that the expert group has had many discussions on whether the catalogue has been adjusted or not. The improper price of medicines and the limited ability to pay for financial funds may be the main reasons hindering the catalogue update.
According to the existing free catalogue, the government's drug expenditure is more than 2,000 yuan per person per year. If new drugs such as Tweed Kay are added to the catalogue, the cost will be increased to more than 5,000 yuan.
People living with HIV who receive free treatment continue to grow – from 171,000 in 2012 to 610,000 in 2017.
"There is a long way to go." This is the third Sunday in May, and Chen Guo has been silent for a long time after sighing.
This year is the "International Day of AIDS Candlelight Memorial Day". More than 100 countries around the world will light up the candlelight in the commemoration and remember the people who died of AIDS.
In the past 2018, AIDS has claimed 18,780 lives in China.
In the familiar International Airport Departure Hall, Xue Rui is about to start his trip to Thailand again. He maintains the frequency of the annual trip to and from Beijing and Bangkok.
Liu Chang touched out the mobile phone, opened the WeChat dialog box of the purchase, and agreed on the next order of lipirulin.
At the moment, the Shanghai Pudong New Area, marked with "China is not for sale" anti-AIDS drugs, is continuously transported to Southeast Asia and Africa, and then returned to China through the secret drug circulation market.