Lymphoma: Nowhere to tell for many stranded families

9.15 is the annual “World Lymphoma Day”. Among the more than 70 subtypes of lymphoma, the diagnosis of some rare subtypes is difficult and the treatment is tortuous, which has brought great trouble to patients and families. With the continuous emergence of innovative drugs in recent years, lymphoma is expected to be treated as a “chronic disease”.

“A Life That Suddenly Wins”
“I usually don’t smoke, drink, stay up all night, why shouldn’t I fall on my head!” It was an ordinary unit medical examination. Xu Fengnian, 42, was diagnosed with a disease of less than one half a million “Probability of rare tumors. Although five years have passed since the diagnosis was made, in retrospect of that scene, Xu Fengnian’s face still has an unbelieving expression. “Calculated with the population of 6 million in Wuxi, people with our disease will be returned in proportion. With less than eight people, the probability of winning a lottery is lower. ”

From physical examination of spleen enlargement to diagnosis of mantle cell lymphoma (According to data released by the World Health Organization, currently identifiable lymphomas can be divided into about 70 subtypes, of which mantle cell lymphoma is one of the more aggressive Species, the disease progress is very fierce), it took less than two months before and after. In this regard, Xu Fengnian was lucky. Because the work unit is located in Shanghai, and coupled with Wuxi and Shanghai, the high-speed rail only takes more than half an hour, and from the beginning, it was able to receive relatively standard treatment in Shanghai hospitals.

In the “lymphoma home”, the largest community of lymphoma patients in China, there are many patients from the early signs to the final diagnosis of patients with various difficulties.

The patient who lives in Fu’an, Fujian, Blue Sky, is a dozen years older than Xu Feng. It took almost two years from the doctor’s appointment to the diagnosis.

“In the beginning, I only got a few bags, like mosquito blocks, but it didn’t disappear for a long time.” Lantian recalled, “I have used external medicine for hormone-type skin diseases, and also took Chinese medicine. Later, I started to have a cold due to the decreased immunity. A large area of ​​the lung was infected and inflamed. From dermatology to respiratory medicine, because he couldn’t stay in the hospital, he had to see a doctor in the urology department, and finally went to the hematology department. ”

Coincidentally, Hu Rong, a patient in Puyang, Jiangxi, 700 kilometers away, was also treated as “lung cancer” for more than half a year because of lung lesions. His daughter, who worked in Jiangsu and Zhejiang provinces, assigned him a hospital in Shanghai and was diagnosed with another rare lymphoma, chronic lymphocytic leukemia (CLL), commonly known as “slow lymphoma.”

According to the “Lymphoma White Paper Survey Report” in 2019, of the nearly 5,000 lymphoma patients participating in the survey, those who had misdiagnosed experience accounted for 43% of the total number of respondents, and most patients needed to go to Beijing, Shanghai, Guangzhou, etc. Only in cities or provincial capitals where medical resources are concentrated can a diagnosis be confirmed.

“Lifetime Medicine”
Once diagnosed, this “painful process” has just begun.

“If you have tried chemotherapy, you will never want to suffer twice.” Hu Rong said. But to save money, he persisted for 4 months, and the obvious side effects caused him to lose his sense of taste. Under his teeth, he began to consider a second treatment option proposed by the doctor, taking targeted medicine. However, at the time, the price of imported targeted drugs was as high as 48,000 yuan per bottle (21 capsules), which made this “poor household” family who had not removed their caps suffocated. “At that time, it was said that it was necessary to pay for at least three months before enjoying charitable donations.”

Before the illness, Hu and his wife worked outside the home all year round, and they had a little savings in their hands. Hu had long thought about “the daughter is old, and I want to find a good family for her.” But it has to be used in the treatment of illness.

During the three or four years after his husband’s diagnosis, Mrs. Hu took on the heavy financial responsibilities of the family, and sometimes even worked three jobs by one person, and had to provide for her son who was studying in the county seat to go to school.

“I took this medicine as soon as I took it. I never thought I would take it for life.” Hu Rong, the head of the family, was full of regret.

Blue Sky, who lives in Fu’an, is a two-employee family. He is the leader of a primary school in the town. The couple ’s income has caught up with the “well-off” level. However, after two years of treatment, more than 200,000 foreign debts have been owed.

As the treatment progressed, his mind became more and more important. “In the last review, I found that two tumors have become larger. I can only go to Hong Kong to buy a generic drug through a patient, which costs more than 4,000 yuan per injection. The combination of two targeted drugs requires every three weeks. A shot … “With the couple’s combined salary of less than 10,000 yuan, and the tuition of the daughter who is studying in college, this account is more than enough to make ends meet.

From malignant tumors to “chronic diseases”?
Xu Fengnian was in depression for a time after his diagnosis. It was the company of the wife and daughter around him that helped him get through the level. To this day, he raised his finger in front of reporters and counted, “I’ve been through five years, and live a year or two more than the median survival time of 3-4 years.” There are patients with rare tumors on the Internet who have survived the diagnosis for 13 years. It is a great encouragement to him.

This “survival” didn’t end with him alone. As the only targeted drug user in Fu’an, Blue Sky has closely followed the policy trends since the beginning of the national health insurance negotiations. As soon as the medical insurance policy was implemented in May this year, he contacted the local hospital pharmacy and filled out a special application form (because the unit price of the targeted drug is higher and the number of patients using this drug is less, the general hospital will not take the initiative (Medicine), “That day, as soon as the medicine arrived in Fu’an, they called me. It was almost the fifth day after the application was calculated by me.” Blue sky’s eyes flashed suddenly, as if the illness was thrown away in an instant Behind my head.

However, during the “out of file” period caused by the application and circulation of the drug, he still needs to reserve it in advance or through the help of the patient’s memory in order to support him.

How to continue maintenance treatment in the future? The problem still hangs over the patient’s head.

Fortunately, with the advancement of medical technology, lymphoma has got rid of the shackles of radiotherapy and chemotherapy in the past, and the development of local new drugs is also accelerating.

Professor Zhu Jun, director of the Department of Lymphoma, Peking University Cancer Hospital, said in an interview, “In recent years, the field of lymphoma has undergone several leaps. With the introduction of new drugs, patients may achieve a state of ‘no chemotherapy’ in the future. From malignant tumors to chronic diseases. ”

“The only hope is to enter the” medicine for rare diseases ”
Internationally, the definitions of rare diseases vary from country to country, and in China, there is currently no legal interpretation of rare diseases. As early as the 2010 China Expert Seminar on Definition of Rare Diseases, held in Shanghai, it was suggested that diseases with an incidence of less than “one half a million” should be defined as rare diseases. In May 2018, the “List of Drugs for the First Rare Diseases” was officially released. A total of 121 diseases were included, including only 4 rare tumors. Subtype lymphomas were not listed.

In comparison, according to the National Institutes of Health (NIH), nearly 7,000 diseases have been identified as rare diseases, of which more than 500 rare tumors have been registered; and the rare tumors registered in the European Union in 2007 have also reached As many as 198 kinds.

According to the data of the “Lymphoma White Paper Survey Report” in 2019, the economic burden of several rare lymphomas such as anaplastic large (ALCL) and mantle lymphoma (MCL) is among the top in the cost of lymphoma treatment at over 60% three.

After the publication of the first rare disease catalogue, the “Lymphoma House” issued an appeal to the Rare Diseases Alliance, hoping to replace several rare subtypes of lymphoma-mantle cell lymphoma, chronic lymphocytic leukemia, Fahrenheit giant Globulinemia and Hodgkin’s lymphoma are included in the next batch of national rare disease lists, so as to achieve the standard of rare disease medication to ensure the treatment accessibility of “cancer minority” patients.