Only 30 of hemophilia patients in China have registered cases, why are so few registered?

April 17 is World Hemophilia Day, and this year's theme is "Adapting to the Changing Post-Pandemic Era to Sustain Care".

According to the statistics of foreign incidence, there are at least 100,000 hemophilia patients in the country, but only more than 30,000 are currently registered.

Hemophilia is a group of bleeding disorders with inherited coagulation disorders, and there are several types.

However, no matter what kind of hemophilia, there are several common features: impaired production of active thromboplastin, prolonged coagulation time, lifelong bleeding tendency after minor trauma, and "spontaneous" bleeding in severe patients without obvious trauma. The most common bleeding in hemophilia is joint bleeding.

For a family, the cost of hemophilia prevention and** is extremely high.

Although the level of medical care in our country is constantly improving, and the cost of medical care is also constantly decreasing, there are still many families who are unbearable and even bankrupt.

In order to help more hemophilia patients, on April 17 this year, Roche Pharmaceutical, together with the Red Cross Society of China, the China Hemophilia Cooperative Group, the Beijing Life Oasis Public Welfare Service Center, and the Beijing Hemophilia Home Rare Disease Care Center, jointly held the China Hemophilia "0 Plan" and the launch of the China Hemophilia Child Survival Research Conference.

This is the beginning of the "0 plan" for hemophilia in China. <

But today, only 30 percent of the estimated 100,000 hemophilia patients have been registered.

Why is this happening?

Personally, I think that, on the one hand, is due to insufficient publicity.

Many people may not have heard of the new term "Plan 0", and even if they do, they don't understand what it is for.

In the final analysis, the news did not reach the broad masses directly.

On the other hand, it is due to the suspicious psychology of the common people.

I don't believe it, I can't believe it. Skepticism about the existence and implementation of the "0 Plan".

After all, there are always a few who are willing to be the first to eat crabs.

Because many patients will choose not to register the case out of self-protection after learning that they have hemophilia, so that others will discriminate against him because he has hemophilia.

The first is that their patients themselves do not know that they have this disease, and secondly, the previous medical equipment is not so perfect, at that time they detected such cases, but they did not record them, and the second is that they themselves knew that they had such a disease, but due to economic factors, they did not go to **, so it could not be recorded in the file.

Personally, I think that the reason why there are so few registrations is probably because hemophilia patients are more taboo about this disease and are reluctant to register.

Because many people are not registered, the reason is that these patients are not aware of the seriousness of the problem, so there is no financial support.

Because patients in our country do not pay attention to this aspect, no one will register without mandatory registration. Moreover, the hospital-related records were not in place, and patients were not tracked in time, resulting in the interruption of many patient information.

Hemophilia hereditary coagulation disorder is a bleeding disorder, which is characterized by impaired production of active thromboplastin, prolonged coagulation time, and a lifelong tendency to bleed after minor trauma, that is, "once there is a wound, the bleeding cannot be stopped", and people with severe disease will have "spontaneous" bleeding even if there is no obvious trauma. Although hemophilia is a rare disease, it is estimated that 100,000 people suffer from hemophilia in China, but only 30,000 people are currently registered, and a big reason for this situation is that everyone lacks a correct understanding of hemophilia, and the public is still relatively unfamiliar with hemophilia.

The World Hemophilia Federation holds an event on April 17 every year, hoping to attract the attention of the whole society. Hemophilia is an X-linked recessive genetic disease, which is generally carried by women, with male onset and rare in female patients. Patients with hemophilia will have bleeding from joints or muscles and soft tissues, such symptoms will appear at a very young age, if a child has such a situation, family members must pay attention to INDIGO, INDIGO should be sent to the hospital in time, timely delivery, timely treatment, because without timely treatment, it is easy to cause joint damage, deformity, pseudotumor formation and other sequelae, so we must be vigilant against hemophilia.

In fact, I still hope that everyone can face up to this disease and do a good job of registration, so that we can better understand the matters that should be paid attention to in this disease, so that we can get it as soon as possible, and patients with hemophilia should also avoid trauma as much as possible to reduce the possibility of bleeding. Also, be sure to follow your doctor's instructions and not use drugs such as aspirin and non-steroidal anti-inflammatory drugs, as these drugs can affect platelet function.

Finally, no matter what the disease is, it should be faced, and if there are symptoms, check it in time, and be in time.

Because everyone thinks it's a bad disease, they don't want others to know about it, but I think it's a very backward point of view.

Because people feel that this is their privacy, they don't need to let everyone know about their physical condition.

Only 30 percent of patients with hemophilia in China have registered cases, and the reason why 70 percent of people are reluctant to register their medical records is because many feel that this is privacy, and that registering will not bring benefits to them, and they also expose their own conditions.

Because many people feel that registering their medical history has a certain impact on them, they are reluctant to register.

This type of hemophilia is caused by a deficiency of certain clotting factors, which is basically caused by genetic factors.

Because these patients have a lack of clotting factors in their bodies, they will develop hemophilia, which may also be a family history.

Because the human body lacks the relevant blood clotting proteins, the blood clotting disorder will cause this disease.

There are two types of hemophilia registries:

One is the national registration, which has to be registered with the hemophilia management centers in various provinces and cities, and it has been carried out for two years, and I have not seen any other movements. There is also no state subsidy. Maybe there will be one later? I don't know.

The second is the self-registration of blood friend organizations in various provinces and cities, the purpose is to exchange experience and information with each other, the situation is different from place to place, some places are better organized, and some places only have such organization names.

The reimbursement rate of NCMS varies from place to place, with 90% of the applicants in some places and still not covered in some places, but the overall trend is getting better and better.

The subsistence allowance needs to be applied to the local civil affairs department. As long as your situation meets the conditions of the subsistence allowance, you must actively apply for it, and you will apply for it.

Go to the hemophilia home ** to register, it is useless to register, and the reimbursement of medical expenses needs to go to the local area to go through the procedures.