1994年7月17日日曜日

AIDSボランティア訪米報告(Fact-Finding Visit to the US - AIDS Volunteer Work)

1994年7月4日~16日。当時私は日本の製薬会社に勤務し、その会社の企業内労働組合(組合員1300人)の非専従(仕事と兼任)の中央執行委員長をしていた。

連合が『ゆとり・ゆたかさ』を目標に掲げる中、医薬品産業に働くものが直接それを追求することには疑問を感じた。コミュニティという概念やお互いに助け合う構図の中で何か新しい切り口は見つけられないものかと考え、『AIDSボランティア』に焦点を当ててアメリカを訪れた。


1.はじめに - Preface

高齢化、痴呆、ガン、AIDS等への対応は、医薬品産業の社会的使命である。同時に、医薬品産業に働くものの労働組合として、我々に何ができるのか、真剣に検討しなければならない時期にきている。

企業内組合といえども、自らの豊かさを求めるだけでは自己完結することはできない。つまり、『社会的な広がり』の中で自らを位置づけることができなければ真の豊かさを見いだすことはできない。このような認識のもと、今般『AIDSボランティア』に焦点を当て、以下のような観点からアメリカの実状を学んだ(中央執行委員2名を派遣)ので報告する。今後の活動の基盤とするとともに、その成果を広く共有していきたい。

訪米の観点:《社会・教育・予防-ボランティア・カウンセリング》、《臨床・治療-医療現場》、《基礎研究》、《行政》、《労働組合》、《その他》。

写真:実際の報告書の表紙の一部。

2.ボランティア - Volunteer

アメリカに行ってすぐに気づいたのは、彼らにとってボランティアがごく自然な行為であるということ。もちろんボランティアをしないことも許容されている。

日本では、ボランティアといえば『善意』という言葉を思い浮かべるが、アメリカでは『当然の義務』のような印象を受けた。AIDSに関していえば、行政や医療体制・保険制度の狭間にできた空白地帯を多様なボランティアがサポートしている。政策や制度の不備を批判し、改善することも一つの重要な行動だが、何もしないことへの言い訳にもなる。本当に助けが必要な人に、現実的な方法で対処するという彼らの流儀(伝統)は、少なくとも当事者にとってきわめて実質的で心強い。

ボランティアは、その行為を受け取る人たちのために行うもの。『善意』はきっかけに過ぎない。

写真:小児病棟を慰問する Big Apple Circus のピエロたち。AIDSと闘う子供たちの強い味方だ。遊戯室はたちまちお祭り騒ぎ(Harlem Hospital Center, New York)。

3.コミュニティ - Community

アメリカのボランティア精神の底流には『コミュニティ』という概念があるようだ。しかし、我々が普通にイメージするコミュニティとはいささか趣が違う。AIDSへの対応を例にとると、ゲイのコミュニティが牽引役をはたしたし、おそらく現在の状況では「アメリカ」とか「人類」というようなサイズのコミュニティがイメージされていると思われる。

彼らは、自分が帰属するいくつかのコミュニティの中で必要に応じて、可能な範囲でお互いに助け合って生きている。誰が助け、誰が助けられているのかは大きな問題ではない。『助け合って』いる状態こそがコミュニティの要件だ。つまり、助け・助けられ、受け入れ・受け入れられることは、コミュニティの中で、その時その時の役割分担に過ぎない。

助け・受け入れるあなたがいなければ、助けられ・受け入れられるあなたもいないし、コミュニティも存在しない。

写真:たまたま不要になった食料がこうして必要な人に届けられる。飾り気はないが、ダンボール箱一つで事足りる(ActionAIDS, Philadelphia)。

4.カウンセリング - Counseling

アメリカでは、医療とカウンセリングが縦横の糸として複合的に機能している。

特にAIDSの場合、物理的・薬物的治療だけでは十分に機能しない。AIDSは精神的・経済的・社会的要素の大きい病気だ。HIV抗体検査の前後はもちろんのこと、陽性判定後、発病後もカウンセラーのはたす役割は大きい。AIDSは依然として死の病であり、感染者/患者およびその家族にとって心理的なサポートは不可欠である。さらに社会的(偏見や差別)・経済的(保険や住宅)問題を感染者/患者が独自に処理することは不可能に近い。

日本人は他人に心を開くのが苦手だ。しかし、AIDSに関しては感染者/患者を包括的に支える体制が不可欠だし、またその支えを受け入れる文化も必要だ。

写真:AIDSの医療現場において、カウンセリングとボランティアは、医療の一環として不可欠な要素である(NIH Clinical Center, Bethesda)。

5.AIDS先進国から - Information & Advice

行政、医療・研究、企業・労働組合、コミュニティなどの様々のチャンネルで、アメリカのAIDS対応策の枠組みはかなり整っていると感じた。

しかし、今回面会した誰もが口を揃えてこう言った。『現在の状況は、10年間の試行錯誤の結果だ。当初は偏見や差別に満ち満ちていたし、今だってなくなったわけじゃない』。確かにアメリカのたどってきた道が理想的なわけではない。実際に感染爆発を起こし、すでに20万人を超す犠牲者を出している。また、その背景にはホームレスや麻薬などの経済的、社会的な問題が複雑にからんでいる。

一方、日本ではその数は比べものにならないくらい少ない。しかし、だからといって今後も大丈夫だということにはならない。この現象は、単に現時点の、社会・経済情勢や感染経路などの偶然の所産に過ぎない。今までは幸運だったと言った方が正確だろう。事実、日本でも感染者は増加する傾向が見られる。それが急激な変化を見せたとき、はたしてあらゆるチャンネルを総動員して、ねばり強い瀬戸際作戦を展開していけるだろうか。

明らかにアメリカはAIDS先進国だ。幸いにして我々は、対策に必要な多くを彼らから学びとることができるし、彼らは喜んで協力してくれるだろう。そして何よりも彼らに見習うべきなのは、現在の比較的整備された状況そのものよりも、解決の糸口も見いだせない厳しい環境の中であらゆるチャンネルの関係者一人一人が現実を直視し、行動し、組織し、そしてAIDSに立ち向かってきた事実とそのプロセスなのではないだろうか。

写真:汚染物を捨てるための赤い容器(注射針・一般)や病室の注意書きなどはどの病棟でもよく整備されている。AIDS UNIT(エイズ病棟)特有の設備は特に見あたらない(St. Luke's-Roosevelt Hospital Center, New York / The Graduate Hospital, Philadelphia / Whitman・Walker Clinic Inc. (Elizabeth Taylor Medical Center), Washington, D.C.)。

写真:コンドームのキャンペーンが盛んに行われている。AIDSは性感染症の一つにも分類され、コンドームはHIV感染の予防に非常に有効な手段だ(Whitman・Walker Clinic Inc., Washington, D.C.)

6.あらゆる角度から - Multidisciplinary Approach

今回訪問した National Institute of Health(国立保健研究所、94会計年度の予算は約110億ドル、12%がAIDS関連予算)では、面会した各部門(National Cancer Institute (NCI)、Drug Abuse (NIDA)、Mental Health (NIMH)、Allergy and Infection Diseases (NIAID)、Fogarty International Center、Office of AIDS Research)の担当者の方々が、各部門の観点からそれぞれAIDSへの対応について熱心に語ってくれた。

このような全方向的な対応は日本的風土からは想像しにくいが、AIDSという病気の特性を考えれば、あらゆる観点からのアプローチが必要になる。また、そのようなアプローチがなければ、AIDSという病気に立ち向かっていけないということを実感した。

他人まかせ、お役所仕事、臭いものにはフタ式の発想を払拭しなければ、人類が直面している最大級の社会問題であるAIDSに対処できない。日本だけが例外のはずはない!

写真:IVDU(静脈注射による薬物使用)に関係するAIDS症例は全体の30%以上。NIDAがやっきになるのも当然のこと。

7.患者の視点 - If Positive?

AIDSの代表的な日和見感染症の一つであるカリニ肺炎の予防的治療にはペンタミジンのエアロゾル吸入が一般的である。吸入治療を行うためのチェンバーの中に座ってみた。大げさかもしれないが、それはまさにHIV感染の疑似体験だった。はずかしい話だが、ものの10秒で逃げ出した。

HIVに感染し、生と死に直面するストレスにさらされ、抗ウイルス剤の副作用と闘い、友人とも疎遠になり、ひょっとすると職を追われ家族からも見放された一人の感染者が、冷たい感じのするこの鉄の箱の中に座って、肺の奥深くまでペンタミジンを吸い込む。正面には『Do Not Spit!』の張り紙がしてある。治療は約30分、いったい何を思うのだろうか....。

日本の医療には患者の視点が欠落していると感じることが多い。AIDSの場合、診療そのものが拒否されるような事態も生じている。一度、感染者/患者の立場に立って、じっくりと考えてみてほしい。

写真:ペンタミジン・チェンバー(The Graduate Hospital, Philadelphia)。

日和見感染症:HIVに感染し、免疫機能が低下してくると、様々の感染症を発症しやすくなる。どの段階でどの感染症が発症するかは特性できないため、AIDSによく見られる一群の感染症は日和見感染症と呼ばれる。

8.困難に直面する前に - Let's Act Now!

アメリカで報告されたAIDS症例数は41万1907(94年6月現在、WHO)、感染者は100万人以上と推定されている。我々がフィラデルフィアで訪問した The Graduate Hospital だけでも、常時2000人以上の感染者/患者を治療している(外来主体に移行中)。医療機関にとって、もはや特別な病気ではない。

日本では、同じく6月末までに764のAIDS症例と3389人のHIV感染者(AIDS患者を含む)が報告されている(何れも凝固因子製剤によるものを含む)。確かに身近な病気として実感するのはむずかしいかもしれない。

しかし、実感できたときではもう遅すぎる。AIDSは、最初は徐々に、次に加速度的に、そして最後には爆発的に増加する。遅れれば遅れるほど対策はますますむずかしくなる。そして何より、あまりにも大きな犠牲と悲しみを強いられることになる。あなた自身、そしてあなたの配偶者や家族や友人や同僚がその困難に直面する前に、まず一人一人がAIDSを自分自身の問題として正確に認識し、行動する必要がある。

写真:年間のHIV感染発生数の推計(WHO資料)。今世紀末の感染者/患者の累計は3千万人から4千万人と予測されている。少なくとも世界の人口の200人に一人が感染することになる。特にアジアの増加傾向は注目に値する。

9.日本の現状 - in Japan...

日本の現状は10年前のアメリカの状況に近い。しかし、この数字は法律に基づいて報告されて症例の記載であり、特に感染者数については必ずしも実態を示すものではない。

世界的に見れば奇跡的な少なさだが、決して将来的にも増加しないことを保証するものではない。現状を幸運と喜ぶことはできても将来を楽観することは許されない。

大切なのは、早急に実態を把握し、今後の動向を予測すること。そして早い段階で必要な対策を講ずることだ。

事態を過小評価して無為に時間を浪費すれば、取り返しのつかないことになる。日本には国民皆保険制度や優れた教育システムがある。今なら、日本なりのやり方で何とか対応策を講ずることができるかもしれないのだ。

写真:94年6月末までの国内の感染者/患者数の推計(厚生省資料、凝固因子製剤による感染者/患者は除く)。グラフから明らかな増加傾向が読みとれる(特に女性)。少ないからといって油断は禁物。

10.今後に向けて - What We Can Do

『AIDSボランティア』に焦点を当て、社会貢献という観点から『我々に何ができるのか』が今回の訪米のテーマだった。そして、意外にも『できることから始める』というのがその答えだったように思う。これは個人はもとより、あらゆるスケールの組織活動に当てはめることができる。

訪米の結果として我々がいま強く必要性を感じていることを以下に列記し、同時にその重要性を広く訴えたい。

写真:『ぼくを抱きしめて』と両手を広げる子供(Harlem Hospital Center, New York)。

A.マクロ的対応に関して - Public Issues in Japan

◇早急に感染の実態を把握し、今後の動向を予測すること。
◇多方面におよぶ包括的な対応と社会的認知を喚起すること。
◇医療機関(医療体制・ネットワーク)、医師・医療従事者(十分な研修・教育)への緊急の対策。
◇感染者/患者の視点を重視し、今後の医療を展望すること。【感染者/患者に必要な医療・社会環境を総合的に整えていくという方向の発想が望まれる。カウンセリング導入に関する積極的な働きかけも必要。】
◇明らかに感染爆発を起こしつつあるアジアに対する対応。

B.労働組合として - Labor Unions

◇自らの構成員の保護が第一義的役割。
◇労働組合としての組織的対応と行政への働きかけ。【労働組合はAIDS対策の大きな枠組みの一つとなるべき組織体。特に医療や医薬に関わる労働組合では一層の取り組みが必要だ。】
◇ナショナルセンターとしての連合の役割。

C.我々の労働組合として - Our Union's Plan of Action

◇AIDSキャンペーン(予防、情報、職場の問題)の実施。
◇ボランティアに対する意識醸成(コミュニティの観点から)。
◇今回の訪米で得た成果を広く活用すること。
◇《A》《B》の各項目に対する支援、広報活動。
◇医療のあり方について改めて考える必要がある。医療・健康保険のシステムや財政の理屈が先行して、我々の目もそれに向けられている。しかし、まず議論されるべきは、我々が受ける医療の質であり、例えば一人のHIV感染者/AIDS患者として我々がどのような医療を望むかではないだろうか。

D.一人一人の問題として - Individuals

◇第一にAIDSが現実の問題であることを認識してほしい。そしてAIDSが投げかける様々の問題を、感染者/患者の視点を借り、一人一人の問題として考え、そして行動してほしい。

写真:笑顔で見送ってくれたAIDSホスピスのシスター。ホスピスは住宅地の中にあるごく普通の家だ。最後のひとときをできるだけ普通に快適に生活できるよう多くのボランティアが出入りする(Calcutta House, Philadelphia)。

11.We Visited:

ボランティア関連施設・組織
■ St. Luke's-Roosevelt Hospital Center (New York)・Friendly Visitor Program
■ People's Emergency Center (PEC)(Shelter for Homeless Women)(Philadelphia)
■ Calcutta House (Hospice for People with AIDS)(Philadelphia)
■ Metropolitan AIDS Neighborhood Nutrition Alliance (MSNNS)(Free Meal Service for Neighbors Living with HIV/AIDS)(Philadelphia)
■ We the People Living with HIV/AIDS (Community Center Run by People Living wiht HIV/AIDS for People Infected with and Affected by HIV/AIDS)(Philadelphia)
■ Philadelphia Health Management Corporation (PHMC)(Non-profit Public Health Organization)(Philadelphia)
■ ActionAIDS (Volunteer-Based, Not-for-Profit Organization)(Philadelphia)
■ AIDS Information Network (AIDS Libraries)(Philadelphia)

医療機関
■ St. Luke's-Roosevelt Hospital Center (New York)・AIDS Unit
■ Harlem Hospital Center (New York)・Pediatric AIDS Unit, Perrots from Big Apple Circus
■ Beth Israel Medical Center (New York)・AIDS Unit
■ The Graduate Hospital (Philadelphia)・AIDS Unit, Pentamidine Chambers
■ NIH Clinical Center, National Institute of Health (NIH)(Bethesda)・Social Work Department
■ Witman・Walker Clinic Inc. (Washington, D.C.)・Elizabeth Taylor Medical Center

研究機関
■ St. Luke's-Roosevelt Hospital Center (New York)・Inada-Lange Foundation for AIDS Research
■ National Cancer Institute (NCI), National Institute of Health (NIH)(Bethesda)
・DR. Tsuyoshi Kakefuda, Laboratory of Melecular Carcinogenesis
・Dr. Hiroaki Mitsuya, Experimental Retrovirology Section
■ National Institute of Health (NIH)(Bethesda)
<Q&A Session with Delegates from>
・Office of AIDS Research
・National Institute on Drug Abuse (NIDA)
・National Institute of Mental Health (NIMH)
・National Institute of Allergy and Infection Disease (NIAID)
・Fogarty International Center

政府機関
■ Office of AIDS and Special Health Issues, Food and Drug Administration (FDA)(Rockville)
■ Office of National AIDS Policy, Executive Office of the President (Washington, D.C.)

労働組合
■ Service Employee International Union (Washington, D.C.)
■ Laborers' International Union of North America (Washington, D.C.)
<Q&A Session with Delegates from>
・AIDS Project, American Federation of Labor and Congress of Industrial Organizations (AFL-CIO)
・American Federation State County Municipal Employee (AFSCME)
・Social Security Administration
・Office of HIV/AIDS Education, American Red Cross

その他
■ Caremark Inc. (Health Care Company)(New York)

謝辞 - Acknwledgements

今回の訪米の企画にあたって、国立国際医療センター・エイズ医療情報室の桜井賢樹博士、IARC/WHOの山崎洋博士、NCI/NIHの掛札堅博士、ICEFの鈴木且巳氏・宮崎典子さん、LIUNAのマイケル・ボッグズ氏はじめ多くの方々のご支援をいただいた。AIDSコーディネータの林素子さんには、ニューヨーク、フィラデルフィアにおける訪問先のコーディネーションをお願いし、また現地での我々の行動を終始サポートしていただいた。ここに謹んで感謝申し上げます。

また、アメリカの約20施設で約50人(写真)の方々が我々の訪問をあたたかく受け入れ、貴重な情報と現実的なアドバイスを惜しみなく与えて下さった。心から感謝申し上げます。

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