Kunming City, Sanqing Headquarters.
Wei Kang looked at the report in his hand with a look of surprise on his face.
The report lists the results of the orphan drug generic plan of the generic drug department led by Gu Xian in the past few months.
A long list of completed and pending medications.
Wei Kang looked at the completed list of generic drugs for rare diseases, and the corners of his mouth suddenly twitched.
Nine generic drugs!
Gu Xian, are you living in the laboratory 24 hours a day and using all your might?
He looked at Gu Xian sitting opposite, nodded slowly, and praised: "Very good, I saw you right. Let's arrange the listing as soon as possible."
"However, you should take some time to rest for a few days and don't break down your body." Looking at Gu Xian's big dark circles under his eyes, he couldn't help but advise.
Gu Xian nodded, took the signed report, and left happily.
Soon, Sanqing issued an announcement on its official website, announcing the launch of the following nine generic drugs for rare diseases.
Nitisinone (capsules): congenital tyrosinemia
Glatirel (injection): patients with relapsing multiple sclerosis
Fabuzan (agalsidase beta for injection): Fabry disease
Pyridostigmine bromide (tablet): myasthenia gravis
Treprostinil (injection): pulmonary hypertension
Bosentan (tablets): Pulmonary hypertension
Icatibant (injection): hereditary angioedema
Deferasirox (dispersible tablets): thalassemia iron overload
Sodium dimercaptopranesulfonate (injection): Hepatochromia
Not many people know this information except for the patients who frequently refresh the Sanqing official website.
But when those patients with rare diseases saw the launch information of specific drugs related to them, their eyes lit up and tears filled their eyes.
****
Ning City, People's Hospital.
32-year-old Li Lei is an ordinary Fabry patient. He came to the hospital for daily follow-up consultation today, preparing to prescribe some painkillers and other drugs.
He started to suffer from the disease since he was a child. Every time his fingertips and legs hurt as if they were broken. Later, he started to have headaches when he was in high school. When he was living in school, he hit himself with a wooden stick every day to relieve the pain. The pain was really unbearable. I took leave and went to the dormitory to cry alone.
It didn't get better after I went to college. It just kept hurting. It hurt all over my body. It hurt in different positions every two weeks. Sometimes the pain was severe and sometimes it was mild. There was no pattern. It just kept hurting until I graduated from college and started working.
During this time, he visited all the hospitals in Hai City and couldn't find anything wrong.
Later, he started to feel dizzy, nauseated and vomited. One day, when he woke up in the morning, his right eye suddenly went dark and he could not see anything. He never recovered.
At that time, he was only 23 years old and had just graduated from college.
After graduation, he was expected to have a bright future, but instead he faced one round of blow after another.
It was not until he was 31 years old that he underwent a genetic test and was diagnosed with Fabry disease.
This disease is a rare hereditary disease, passed on to him from his mother. He was married at the time, but he had never had children because of long-term medication. After discovering the disease, it was even more impossible to have children, so it didn't take long for him to make peace with his wife. separate.
The average life expectancy of patients with Fabry disease is 40 years old, but they will develop severe organ failure at the age of 30 and die soon. His mother died of a sudden stroke. At the time, he did not know that it was due to Fabry disease. Only now do I understand the truth.
"Li Lei," the doctor who came back to see him was already familiar with him. After shouting, he hesitated and said: "You can't delay your illness any longer. A special medicine now on the market in China should be effective for your condition."
"I know it's Fabuzan, a drug owned by Sanofi, right? I was overjoyed when this drug first came on the market. I felt so lucky. There was a cure after the diagnosis." Li Lei shook his head and sighed: " It’s a pity that although there are useful medicines, I can’t afford them.”
A wry smile appeared on his face, and he couldn't help complaining: "The imported special medicine Fabuzan is really expensive. The official 5mg bottle costs 9,000 yuan. Calculated according to the adult weight standard, the annual treatment cost is 2 million yuan. What's more?" I will take medication for life. How the hell can I afford it."
He looked at the doctor with tears in his eyes: "Doctor, I also want to live, but there is only one disease in the world, and that is the disease of poverty. If my disease cannot be cured, I don't deserve to live at all. Let me drag it out like this. At the end of my life, this is also a relief for me."
The doctor shook his head and said with a smile: "Li Lei, it's not what you think. Fabuzin is indeed very expensive, but what I just mentioned is a domestically produced generic drug. The price is much cheaper. It has just been launched. It should be very effective for your condition." Great relief.”
When Li Lei heard this, a hint of surprise instantly appeared in his eyes full of despair, and he said in a trembling voice: "How much...how much?"
"The domestic generic drug of Fabuzan costs 300 yuan for a 5ml bottle, which is about 30 times cheaper. Calculating, your annual treatment cost is only 60,000 yuan."
Li Lei trembled, with a look of disbelief on his face: "So cheap? Is it true?"
The doctor sighed: "Of course it is true. Why is it so cheap? Because it is a generic drug of Sanqing. I heard that it has launched a plan for generic drugs for rare diseases. The generic drug of Fabuzan is the first batch. Fortunately, there is Sanqing. Your life is finally saved."
"It is said that we are still talking about enrolling in medical insurance. If you can enroll in medical insurance in the future, you can probably save another half."
"Ah..." It is said that men don't shed tears lightly, but as soon as Li Lei heard this, two lines of hot tears rolled down his face. He suddenly burst out with a strong desire to live: "Doctor, does the medicine have this medicine now? Please open it for me quickly."
The doctor smiled and nodded: "I just arrived yesterday. There are not many patients with this disease in the country. Currently, there are only more than 300 people diagnosed in the country. After hearing the news, I specifically contacted Sanqing and ordered this batch of goods for you. Today I’ll give you a try and see what happens next.”
Li Lei wiped the tears on his face with a tissue on the table and kept nodding: "Okay, I'll listen to you, doctor, thank you."
****
Beijing, Harmony Hospital.
Fang Chao hurriedly walked into the clinic with the child's urine test report, and his wife followed closely behind him holding the one-year-old child.
"Doctor, what happened to the child? Why is the urine black?" Fang Chao looked at the doctor anxiously.
After reading the report, the doctor was silent for a while and then said: "It may be Garrod syndrome, a rare autosomal recessive metabolic defect. The typical symptom is dark urine, commonly known as alkenaria. This The disease is related to metabolic disorders of tyrosine and phenylalanine, and homogentisic acid in urine is toxic to the human body and can cause damage to bones, liver, kidneys and other organs."
"The incidence of this disease is one in a million, and there are very few domestic patients. Currently, there is only one specific drug, which is nitisinone for the treatment of congenital tyrosinemia type 1."
The doctor suddenly smiled and said: "Your child is so lucky. Originally, nitisinone was only available abroad and not available in China, so I couldn't prescribe it to you. However, Sanqing's first batch of orphan drug generic plans happened to have it. This medicine.”
"This is the first drug to treat tyrosinemia type 1 in China. It has just been launched recently. I will go to the hospital to apply for it immediately. The drug should be available in a few days."
Fang Chao was surprised and delighted: "Great, then I'll come back for a follow-up visit on the weekend. How long do I need to take this medicine? Do I have to take it all the time?"
"Your child is only one year old, right? Generally speaking, after the child takes the medicine for 6 months, the blood succinylacetone level drops to normal, the blood tyrosine level drops, and the condition will improve, but the dose must continue to be reduced later. Take.
"Also, in addition to this medicine, you must also strictly control the intake of tyrosine and low phenylalanine in the diet. I will make a list for you. You should pay attention to the above foods."
"Yeah." Fang Chao took out his phone and kept recording, with a serious expression on his face.
****
Haishi, Huashan Hospital.
With the support of his son, 60-year-old Mr. Zhou walked out of the hospital with a disappointed look on his face, his head lowered, and he couldn't help but sigh.
His family lives in Su City, but he came to the hospital in Hai City just to find a medicine.
Mr. Zhou has been suffering from myasthenia gravis for more than a year and has been taking a drug tablet called "pyridostigmine bromide".
This drug is not expensive, about 30 yuan per bottle, and is the only drug used to treat myasthenia gravis.
However, recently, this drug suddenly disappeared from the market.
Mr. Zhou searched all major hospitals and pharmacies in Suzhou City, and even came to Haishi Huashan Hospital in person to inquire, but he could not buy this medicine.
He then continued to search for more than a month, but could not find any trace of this cheap life-saving medicine.
After stopping the medicine for half a month, he began to show signs of serious illness. His eyelids drooped, he could hardly see people, his legs and feet were weak and he could not move around. If he continued to be without the medicine, it would become difficult to breathe slowly. Just wait. Death has come.
He is not the only one looking for this medicine. Many patients in patient groups across the country are also looking for this medicine.
They were all confused, how could such an important life-saving drug suddenly disappear?
Mr. Zhou once asked the doctor, and the doctor said that starting from three months ago, this kind of medicine was no longer available in the hospital.
Myasthenia gravis is an autoimmune disease. The main symptoms are that some or all skeletal muscles are easily fatigued, unable to open eyelids, unable to swallow food, and breathing slowly becomes difficult. Using this medicine can relieve symptoms. Significant relief or relief.
Mr. Zhou's whole family was in a panic. Later, his son found out on the Food and Drug Administration's website that there were three manufacturers of pyridostigmine bromide. However, currently only one pharmaceutical company in Haishi is actually producing.
His son contacted the sales person in charge of the pharmaceutical factory. According to the other party, the company also planned to stop production because the drug was not profitable. Even after the price was increased, there was still no profit. Even the production costs were not enough, so they wanted to lower the price. I gave up the medicine and didn’t want to do it anymore.
The other party also said that due to factors such as rising raw material and labor costs over the past decade, the production of cheap drugs is unprofitable. Therefore, many pharmaceutical companies have given up producing and supplying cheap drugs. In fact, there are many pharmaceutical companies across the country that have production approval for this drug, but they have all stopped production one by one due to cost issues.
After Mr. Zhou found out, he was completely desperate. He felt that he had no choice but to wait for death.
The whole world is gray to him. Now he lies in bed and rests every day. He doesn't want to do anything but read the comments of everyone in the patient group.
Suddenly, Mr. Zhou's eyes narrowed. He saw the group leader sent a message, and then the entire patient group became excited.
"I found out that pyridostigmine bromide produced by Sanqing Pharmaceutical is already on the market. I just bought this medicine at a pharmacy in Kunming."
Then I swiped through a few photos, all of them pictures of medicines, with the words "Sanqing" clearly visible on the packaging box.
Without enough time to read the messages from other patients, Mr. Zhou sat up instantly and shouted to his son: "National people, hurry up! There is medicine, there is medicine!"
Mr. Zhou's son hurried into the bedroom, took his father's mobile phone, looked through the photos, and jumped up in surprise.
"Dad, don't worry, I'll go to the pharmacy to buy medicine right away."
Like an arrow leaving a string, he turned around and rushed out of the room, disappearing.
Mr. Zhou was sitting on the bed, restless, waiting anxiously for fear of something going wrong.
Half an hour later, the son came back carrying a bag of medicine with a happy face.
As soon as he entered the door, he shouted: "Dad, I bought it, I bought it. The price is still the same. The pharmacy owner said that the supply is sufficient, and there is no need to worry about running out of stock in a short time."
Mr. Zhou's worried heart finally relaxed, and he asked in a trembling voice: "Are you sure? Should we stock up on some medicine? What if production is stopped again?"
The son smiled and waved his hand and said, "How can that be possible? This is produced by Sanqing, and they are not short of money. If you are really worried, I will call the manufacturer to confirm."
Mr. Zhou nodded and watched his son dial Sanqing's customer service number.
However, it has always been a blind tone, unable to get through.
The son smiled bitterly and said, "I'll go check it out online. You should also check the group to see if there's any new news."
Mr. Zhou tremblingly took the medicine and opened the WeChat patient group, only then did he know what happened.
It turns out that Sanqing has launched a plan for generic drugs for rare diseases, including pyridostigmine bromide. According to the group owner, Sanqing will continue to produce this drug and will not stop even if it loses money, so everyone can rest assured.
Mr. Zhou finally felt relieved and had a long-lost smile on his face.
