Healthureum Will Revolutionize For Cure The Rare Disease.

Healthureum has developed a registry prototype that can help medical institutions and governmental services to apply blockchain technology. What it is necessary for, how it looks and works, and also — why this example is indicative, we will try to tell in simple words. On an example of rare diseases.

The term “orphan diseases” applies to diseases that are characterized by two criteria: they happen only to a small number of people and, as a consequence, they are usually not taken into account by doctors. Such diseases include, for example, Fabry’s disease, alveolar echinococcosis, high degree myopia, endometrial cancer, etc. In fact, the rarest pathology.

Rare diseases with predominantly (80%) genetic nature were called orphan because they are very different from common diseases. With adequate treatment and systematic use of medicines, a child (as these diseases appear already in early childhood) can grow up to be an entirely reasonable, full-fledged member of society. In the absence of treatment — at best sick human gets a deep disability, at worst — an early death.

The sick cannot survive without help of the state

Despite the fact that all these diseases are united in one group, there is nothing in common between them, except for their rarity. Due to the low spread, treatment of orphan diseases is usually costly. Pharmaceutical companies give preference to the production of those drugs that are in high demand as it is more profitable financially.

People who have been diagnosed one of the orphan diseases are treated at the expense of the state, for free. Preparations for them are costly and rare and are purchased at the request of the Ministry of Health. Patients with rare diseases need lifelong assistance from the state because the price of medicines is exceptionally high. Shortly, most of them face severe disability and early death.

Dealing with the register of such patients is namely what the decision of the Healthureum is oriented.

The total number of patients with rare diseases is 30 million people in Europe, about 25 million in North America. The first law on rare diseases was adopted in the USA in 1983.

Every year, scientists find all new orphan diseases, and drugs for their treatment appear — at best — 5–6 items per year. The reason is that until recently the farm companies were very reluctant to develop them: the cost of bringing a compound drug to the market is incommensurable with the possible profit since the population of patients is not very high. Only the preferences and guarantees of the state can “encourage” the big farm to work with orphan medicines.

The nature of orphan diseases can be different: these are genetic disorders, infectious, autoimmune, etc.

However, the common for all these diseases is the severity of the course of the disease, which threatens life. Therefore, the presence of even symptomatic therapy is a breakthrough for such patients, the possibility of receiving treatment is a chance for a significant improvement in quality and longevity. Blockchain, developed by Healthureum, can give them such an opportunity.

However, there is very little hope for this. Some problems are not resolved for years .

The essence of the problem is that at present most of the registries in the medical field are scattered and monopolized. A typical business process is a supply chain, for example, from registering a patient with a particular disease in the system until they receive a preferential treatment or medication. The patient is enrolled, he is prescribed medication or treatment, next is a purchase of the necessary drugs, then everything is delivered to the pharmacies. At the moment, all these elements of the process have their automated systems, but they are scattered among themselves, and data transfer between them occurs through the paper.

Naturally, in this situation arise such things as falsifications, losses and even misuse of these resources. For example, a doctor can prescribe a drug of a specific supplier, and a procurement specialist — for some reason, changes the supplier-producer. But a change uncoordinated with the doctor can be fatal for the patient, because drugs from different manufacturers, regardless of their fundamentally same formula (for example, insulin) may differ in the way of production and additives, and this can be critically important in this situation.

The system with the use of blockchain system allows to unite the entire chain into a whole and to track this situation. Also, it is possible to monitor the entire chain of operations, as the prototype developed in Healthureum provides an opportunity for this. This can be used by representatives of the Ministry of Health.

The main disadvantage is the ability of any member of the chain to make changes to the data without notification and agreement with other users and supervisory bodies. This is why we developed this decision in Healthureum, the implementation of which allows any abuse in this area to be reduced to zero. And not only abuse but even mistakes.

In total, our mini-investigation, conducted in this article, shows that despite many assignments and decisions, it is still not possible to even accurately calculate what funding is needed to treat orphan diseases.

This issue must be resolved as quickly as possible, and usage of Blockchain, developed in Healthureum, can help with that.

more info please visit http://healthureum.io/