December 24(Friday)

No. 8 [Healthcare] A Great Leap Forward for the HTLV-1 Task Force Team

 

Although it was barely reported due to public attention turning to other political news, on December 20 a very important policy decision was made; one that established a model for addressing intractable diseases.

 

 

Narration: Former Governor of Miyagi Prefecture Shiro Asano
continues to struggle with Adult T-cell Leukemia. This cancer is
caused by Human T-Lymphotropic Virus Type 1, also known as HTLV-1,
which is estimated to be carried by more than 1 million people
across Japan. Most of the carriers never develop any diseases, but
on occasion, it develops into leukemia, as with Mr. Asano, or even
causes serious nerve damage. There is yet no effective treatment
for the virus. However, the development of a comprehensive policy
to address HTLV-1 took a great leap forward on December 20.
 

 

Prime Minister: I am extremely pleased to have worked with everyone here, and that together we were able to make definite progress today.

 

Narration: The "everyone" referred to by Prime Minister Kan
includes the sufferer of HTLV-1-related diseases who attended the
meeting.
On September 8, this patient group made a direct plea to the Prime
Minister, visiting his office. Having received the patients'
request down on his knees to do something about the virus, the
Prime Minister immediately formed a task force team to tackle this
issue, and only five days later the team's first meeting was held.
 

 

Prime Minister: I would like to thank everyone for coming together so quickly for this meeting and proceeding forward with such substantive discussion.

 

Narration: Ms. Kayoko Sugatsuki, who is a member of the patient
group petitioning the government for seven years, initially
believed that things would not change so smoothly.
 

 

Ms. Sugatsuki: Of course, there are some humane people working at the Ministry of Health, Labour and Welfare, and they have been working with us to make a breakthrough on this issue. It's not that the Ministry is bad, but that the vertically-oriented organizational structure of the Ministry means that no matter how much you say you want something done about a certain disease, nothing is ever resolved.

 

Narration: However, as the meetings of the task force team went on,
Ms. Sugatsuki found that her impressions began to change.
 

 

Ms. Sugatsuki: There were many opportunities in each meeting for the patient-side to express its opinions. Over the course of the meetings, I began to really feel that this task force team is serious about coming up with countermeasures for the virus.

 

Narration: Mr. Asano, who was actually an official of the Ministry
of Health, Labour and Welfare before becoming Governor of Miyagi
Prefecture, expressed a similar opinion.
 

 

Mr. Asano: The thing I strongly felt this time was the power of politics. There was no worrying about the status-quo--I really felt there was strong will to find a solution to this problem.

 

Narration: The "strong will" referred to by Mr. Asano was not just
aimed at finding countermeasures for HTLV-1.
Prime Minister Kan sees this initiative as the way leading toward
a much more universal goal.
 

 

Prime Minister: I believe that we could take a first step forward to create a model task force team-based approach for finding breakthrough solutions for those who suffer from various diseases.

 

Narration: Yesterday's meeting (that was held on December 20)
marked the 99th day since the first meeting of the HTLV-1 Task
Force Team, and saw the completion of a comprehensive policy on the
virus. With more than 60% of the infected receiving the virus via
their mother's milk as infants, it has been decided that systems
for maternity checkups and health guidance will be set up across
the country.
In addition, preparations will be made to create a consultation
system for those with the virus, as well as a seamless medical-care
system for examinations and treatments. The Government will also
start efforts to greatly increase research funding. It was decided
that the national government, regional governments, medical
institutions, as well as patient organizations will strongly
promote this policy in close coordination with each other.
 

 

Ms. Sugatsuki: I truly appreciate it.

 

Mr. Asano: I was surprised; I am grateful; I was moved. I am currently fighting what is known as ATL (Adult T-cell Leukemia), and I will overcome this challenge.

 

Prime Minister: In formulating this comprehensive policy today,
I believe that this significant step forward was realized thanks to
your valuable efforts, though you all went through very difficult
times. I will close my remarks with the promise that I will firmly
implement this policy. Thank you very much.

 



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