Regarding an Announcement of the Discontinuation of the OK-432 Support Program by Chugai Pharmaceutical Co., LTD.
Now we would like to ask your help.
We immediately need to take an action for continuing to support the patients who need OK-432 support.
We are the NPO International Lymphatic Malformation Networks (ILMN), formerly NPO Shuhei Ogita Fund, which globally support the patients of lymphatic malformations(LMs).
On October 4th 2018, Chugai Pharmaceutical Co., LD. officially announced to terminate the OK-432 Support Program.
OK-432 (Product name: Picibanil) is one and the only medicine covered by health insurance to LMs in Japan which means that using OK-432 is the first-choice treatment for LMs in our country. But it is a prescription drug approved and distributed only in Japan and Taiwan, so that it is impossible to obtain it in any other country.
Therefore, Chugai established the OK-432 Support Program from a humanitarian perspective and had provided its product for free of charge to medical institutions in more than 80 countries over 27 years*. This program had provided many patients of LMs with opportunities to receive full treatment in their own countries and improve their quality of life.
Having supported to operate the Program since 2003, ILMN had taken a role of responding inquiries from all over the world and receiving applications as apart of Pro Bono activities - Pro Bono refers to volunteers who contribute to society by utilizing knowledge, skills, and experience in their respective fields.
In 2015, in response to Chugai Pharmaceutical Co., LTD.'s request, ILMN had taken the total responsibility of receiving applications for the OK-432 Support Program.
However, in order to address the problems of global pharmaceutical crimes, the application process became increasingly stringent and complex, and it became extremely difficult for ILMN to manage all applications around the world.
In response to this, Chugai announced in autumn 2017 that they would take all application responsibility back to its operation from the beginning of 2018. On December 31, 2017, we ended our commitment after 15 year of heavy responsibilities and changed our name to start new activities.
However, the things took an unexpected turn.
In February 2018, Chugai posted an announcement that they started an investigation on the program and would suspend the Support Program until its results are confirmed. This forced the patients overseas to stop the treatment during this investigation.
After their conclusion of investigation, Chugai officially announced the discontinuation of the OK-432 support program.
This big decision shut the door for the patients of lymphatic malformation overseas to get access to Picibanil.
Patients all over the world had been expecting Picibanil efficacy and waiting for the drug, however it became unable to receive the treatment in their home country.
The only remaining way for treatment is traveling to Japan by spending their entire fortune.
This situation makes relapse the situation in 1992 when a little Calros and family traveled to Japan from Mexico by spending all the money for the treatment because lymphatic malformation patients could not reach the medicine outside Japan at that time.
Since Chugai posted the announcement, we have been receiving many inquiries from over the world concerning what to do or how to get the medicine. The staff of NPO International Lymphatic Malformation Networks are worried about what is the best for them from now on.
We would like to call for your ideas from all over the world on how the patients on lymphatic malformation can secure access to Picibanil in their home countries.
We are very appreciate your help!
1. Picibanil is a prescription drug.
2. Careful management is necessary, such as a temperature-controlled environment because it is a biopharmaceutical product.