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| Opinions from Stakeholders |
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Giving hope for the future to all children suffering from disease |
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  e-book format (Environmental and Social Report 2009) |
(The interview was published in Environmental and Social Report 2009.)
Eisai invites stakeholders to provide feedback, encouraging them to share their impressions and expectations of the Eisai Group.
Their valuable input is used to help Eisai realize its hhc philosophy, and their opinions and suggestions help shape future initiatives. |
Haruko Ouchi
Director, Website Management
Asunarokai
[Profile]
Haruko Ouchi is a director of Asunarokai, a support group for parents of children with juvenile idiopathic arthritis (JIA). Her own son, who is now a sixth grader, developed JIA when he was one year old, leading Ouchi to join the Association. Until last year she was in charge of publicity, which mainly involved producing the group's newsletter. Starting this year, she is working to develop the Association's website, among other things. |
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| What kind of activities does Asunarokai (Juvenile Rheumatoid Arthritis Parents' Association) undertake? |
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| Ouchi: |
Our main activities are consulting with parents of children with juvenile idiopathic arthritis (JIA), making referrals to specialist physicians, and conducting programs to support networking among our member families such as community-based discussion meetings and a summer camp attended by specialists and children with JIA. In addition, recently we have been publishing a pamphlet that explains the disease in a clear way for parents.
JIA is a disease that people have to live with for a long time. And for parents, having to make their children—who are more important to them than themselves—continue to undergo treatment without directly knowing their children's pain is a very big distress. As children with JIA grow up, their parents go through a number of challenges. Many children with JIA start to resist taking medicines at school age, feeling embarrassed in front of their peers, and this is one of the common problems parents face. Also, parents can become intensely impatient and anxious over whether the current treatment is satisfactory. The Association hopes to become a shelter for these parents to ease the burden of their worries. Actually, I think that half the problems of many people who come seeking advice are solved just by getting their worries off their chest. |
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| What is your view of Eisai's activities? |
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| Ouchi: |
We have come to know Eisai since its employees participated in our summer camp for the first time in 2007. Later, we organized a tour to Eisai's Tsukuba Research Laboratories and invited our members. The tour included a session to meet and exchange views with Eisai's researchers. I think that it must have taken courage for a pharmaceutical company to contact patient groups the way Eisai did. We often receive sponsorship from companies, but Eisai was the first to have employees from its research and development divisions and even from the employee training department listen directly to the voices of children with JIA and their families. Our image of pharmaceutical companies being on the side of doctors has changed, and we now see them as being closer to patients. |
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| How has your impression of drugs changed through these activities? |
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| Ouchi: |
At the Tsukuba Research Laboratories we heard from researchers about the long process of developing a single drug and the many difficulties of drug development. This opportunity helped convince the children who were present, more than before, to take their medicine or IV drips. Usually people think of medicines as something that they need to take because the doctor tells them to. Children have even more difficulty than adults understanding the importance of medicine, but I think that learning how medicines are made sparked a new awareness in the children and helped them understand why they need to take them. This was a big change; it is a completely different matter than taking them because one is told to. I also feel that the parents' impression of medicines changed, moving away from negative information such as side effects to an awareness that physicians, patients, and pharmaceutical companies need to cooperate with each other to make good medicines. |
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| What are your expectations of Eisai, going forward? |
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| Ouchi: |
A number of different medicinal treatments have been developed for JIA, but the fact of the matter is that, in certain areas, some children still have not found a treatment that works for them. First of all, our idea is to create an environment where equal treatment is accessible anywhere in the country. An improvement in the disease is a dramatic change in the life of a patient. Pharmaceutical companies have the power to bring about that change, and so I want them to give children the hope that medicines can bring. Children should be given hope by the thought, “Someday an even better drug might be developed. If that happens, then I may get better and may be able to walk without pain.” The Association will continue communicating to children across the country about the necessity and potential of medicines, and I hope that Eisai will be at our side supporting us from the perspective of patients. |
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