父親の入院やら、超体育会系吹奏楽部に所属する娘のマーチングの大会直前のコロナ発熱やらで、すーっかり遠い日のことのようにすら思える鹿児島での『教えて！HTLV-1のこと』シリーズ３冊の出版記念パーティー。でもよく考えてみればまだ10日程度しか経っていない。 このシリーズの編者であるNPO法人日本からHTLV-1ウイルスをなくす会「スマイルリボン」の菅付加代子さんとシリーズ１である『成人T細胞性白血病（ATL)のこと』の著者である宇都宮與先生との出会いはもう15年程前。
当時HTLV-1ウイルスが引き起こす血液がんであるATLの治療薬「モガムリズマブ」がまだ治験段階で、でも難治性の血液がんであるATLに新薬がもうすぐ誕生するやもということで、その調査の過程で取材協力いただいたのが菅付さんと宇都宮先生だったのだ。
がんや在宅医療の取材を通じて出会う医師たちは、患者さんへの思いと医療者としての熱意にあふれる人たちばかりなのだけれども、ATLが発見されたその年に医学部を卒業し、以来ずっとATLという血液がんに取り組んでこられた宇都宮先生。
背景には、都市部に出ていく若者も増えたことから、今では九州に限らず東京や大阪といった都市部でも、HTLV-1ウイルスの保持者（キャリア）や、ウイルスがもたらす疾患であるATL、神経難病のHAMの患者さんも増え、広く分布が見られるようになったものの、南九州、とりわけ鹿児島に多く見られるという地域特性もある。
また、ATLに限らず、今でこそ治療薬の進歩で治る確率が飛躍的に向上した血液がんだけれど、当時血液内科医になるということは、治る見込みがない上に、強い痛みに苦しむ患者さんを前に打つ手がなく、悔し涙を飲むしかないということと同義だったといっても過言ではないということは、血液内科医たちの取材から共通して感じることだ。
治療薬や治療法の進歩には、病気で苦しむ患者さんを救いたいと真に願った医者を含めた科学者たちの思いが確かにあるからこそ、医療が今わかっている最も確からしいことに過ぎず、常に現在進行形で不確かなものを含むものであるにせよ、私は科学的な正しさに基づく医療に敬意を払いたいというスタンスを取る。もちろんそこからこぼれてくるものもていねいに掬い上げたいのだけれども。
って、あれ？
本の紹介をしようと思ったら、お話が妙な方向へ進んでしまったけれど、これはこれで伝えたいことだから、本の紹介と菅付さんのことはまた後日（笑）
菅付さんもまた人を巻き込む天才なのだけれど、まんまと巻き込まれてしまった一人です。 With my father hospitalized and my daughter who belongs to a super-athletic brass band, suffering from a coronary fever just before a marching competition, the party in Kagoshima to celebrate the publication of the three books in the "Tell Me About HTLV-1" series seemed like a distant memory. But when I think about it, only about 10 days have passed.
It was about 15 years ago when I met Ms. Kayoko Sugatsuke of the NPO Smile Ribbon, the editor of this series, and Dr. Atae Utsunomiya, the author of the first book in the series, "About Adult T-Cell Leukemia (ATL).
At the time, "mogamulizumab," a treatment for ATL, a blood cancer caused by the HTLV-1 virus, was still in the clinical trial stage, but a new drug for ATL, an intractable blood cancer, was expected to be available soon, and Ms. Sugatsuki and Dr. Utsunomiya were asked for their assistance in the research process.
The doctors I met through my interviews of cancer and home healthcare are all full of passion for patients and enthusiasm as medical professionals, and Dr. Utsunomiya, who graduated from medical school the same year ATL was discovered and has been working on ATL ever since.
In the background, as more young people are moving to urban areas, the number of HTLV-1 virus carriers and patients with ATL or with HAM, a neurological intractable disease, caused by the virus are increasing, not only in Kyushu but also in urban areas such as Tokyo and Osaka. However, the distribution of ATL and HAM has become more widespread in southern Kyushu, especially in Kagoshima, which is a regional characteristic.
In addition to ATL, the probability of cure for hematologic cancers has improved dramatically thanks to advances in therapeutic treatments, but it is no exaggeration to say that becoming a hematologist in those days was synonymous with having no choice but to shed tears of frustration because there was no hope of cure and no way to help patients who were suffering from severe pain. This is a common feeling among the hematologists interviewed.
Because the advances in therapeutics and treatments are certainly driven by the desire of scientists, including doctors, who truly wanted to help patients suffering from diseases, I take the stance that I would respect medicine based on scientific correctness, even if medicine is only the most certain thing we know now and always includes ongoing uncertainties. Of course, I also would like to carefully scoop up what spills out of that.
Oh,well
I was going to introduce the books, but never mind, that's also what I wanted to share, so I'll introduce the books and talk about Ms. Sugatsuki next time.
Ms. Sugatsuki is also a genius at getting people involved, and I am one of those people!
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