平衡結核病治療和藥物使用
資料來源：www.thelancet.com/infection / Vol 23 / 2023年5月
結核病 (TB) 是全球疾病和死亡的主要原因，世界衛生組織年度全球結核病報告指出，2022 年將有 160 萬人死於結核病。在南非，結核病仍然是主要死亡原因。 這次流行病的焦點是南非開普敦 DP Marais 住院醫院等機構，這是安娜·弗斯菲爾德 (Anna Versfeld) 最近出版的《製造不確定性：南非的結核病、藥物濫用和健康之路》一書的主要背景。 DP Marais 醫院患者的生活一團糟。 他們的背景故事往往有一些共同點：狹窄的生活條件、不穩定或不安全的工作、不良的飲食習慣，以及對女性來說，家庭暴力。 DP Marais 醫院透過其大門接納這些患者，大門上貼著「完成治療後結核病是可以治癒的」標誌。 然而，這些大門內患者的歷史和未來並不反映這一說法的簡單性。 正如 Versfeld 所說，在 DP Marais 醫院的大門內，「照護工作 […] 是被框在生物醫學範圍內進行的，但卻是對社會復雜性做出反應」。
她在《製造不確定性》書中關注的社會復雜性是結核病和吸毒的社會復雜性，它們在塑造健康結果方面相互作用。 弗斯菲爾德展示了造就南非獨特社會景觀的歷史層次。 整個 1900 年代，結核病感染在南非迅速蔓延，部分原因是「借助歐洲富人的順風車傳入該國」，這些富人在豪華康復機構尋求肺部疾病的「氣候療法」。 由於以前從未接觸過結核病的黑人社區的結核病發展出很高的疾病比率，他們被轉移到城市郊區，種族隔離政策和持續存在的系統性種族主義只會加劇種族隔離。 在這些社區中吸毒現象猖獗。 當與十幾歲的女孩討論吸毒模式時，有人推測「也許現在是Tik季節，然後是酒精季節，就是這樣，每種毒品都有它的日子」。 在 Versfeld 記錄的時期內，她發現 DP Marais 醫院 71% 的患者是藥物濫用者。 使用藥物的人面臨著結核病傳播率增加的問題，更有可能發展為活動性結核病，並且經常會規避開始、中斷或不完成治療。 弗斯菲爾德向讀者展示了患者在接受結核病治療和成癮康復計畫的過程中的生活經歷。 其中一個故事發生在巴巴爾瓦的身上，她出身貧困，成為孤兒。 在巴巴爾瓦的成年生活中，她是虐待關係的受害者，感染了愛滋病毒和結核病，面臨飢餓，最終透過酗酒尋求逃避。 當被要求在藥物使用意識會議上發言時，巴巴爾瓦重複了這一說法：「我想離開我所做的壞事。 我想成為我孩子們的母親和父親，因為我沒有家庭」。 巴巴爾瓦的故事充滿了結核病傳播和發展的風險因素，但她將責任和恥辱直接歸咎於自己。
在整本書中，弗斯菲爾德都在探討物質使用的判斷如何與醫院動態相互作用。 她承認，照護人員在與「不守規矩的患者」打交道時感到沮喪，這些患者將自己的健康置於危險之中，不遵守治療計畫，並破壞照護人員的努力。 這些照理人員非常了解患者留下的生活，並相應地提供實際幫助。 他們確保出院的患者有一個可以返回的家，可以重新開始工作，並有利於社會補助的文件。 所有這些努力都是在知道這種零敲碎打的方法無法提供脆弱的保護，使患者免受貧困和吸毒等普遍力量的影響。
對於使用藥物的患者，DP Marais 醫院開設了強制性藥物意識課程。 弗斯菲爾德嚴厲批評了戒酒匿名協會的原則，這些原則形塑了這些課程，並將戒毒定為唯一可能的康復之路。 她指出，「使用藥物和戒斷之間假定的二元關係並沒有提供減少使用藥物和完成治療的工具，而是為失敗設定了條件」，更不用說內在的羞恥感了。 相反，弗斯菲爾德是減少傷害的支持者，她記錄了「從充滿道德觀念的物質使用此種本質上是錯誤的觀念，轉變為承認物質使用是對社會邊緣化的反應」。 她領導的團隊專注於改善結核病與藥物使用共存的照護，並與患者一起工作，以確保他們完成結核病治療，無論其藥物使用模式如何。弗斯菲爾德描述了職業治療師索拉亞儘管最初從不願意採取減少傷害的方法，如何改變為「意識到她完全『禁慾』的願望是不可能的，這與患者艱苦生活的現實不符」。 她接著描述如何不是強制去執行無法實現的目標，「我們可以創造一個環境，使『患者』不會受到評判和標籤[……]，這樣他們就可以接近我們，我們可以一起找到方法讓他們應對所有的困難和生活的掙扎，如此才能完成治療」。
弗斯菲爾德以驚人的清晰度和簡潔性，在社會和個人層面上提煉了結核病和吸毒交叉產生的複雜混亂。 她的信息貫穿整本書：提出這種共同規範的患者是有希望的，我們只需要向他們妥協。
菲比·阿什利–諾曼
Balancing tuberculosis therapy and substance use
www.thelancet.com/infection Vol 23 May 2023
Tuberculosis (TB) is a major cause of illness and death globally, the annual WHO Global TB Report stated that 1·6 million people died from TB in 2022. In South Africa, TB remains the leading cause of death. The focal points of this epidemic are institutions like residential hospital DP Marais, in Cape Town, South Africa, which is the principle setting of Anna Versfeld’s recent book Making uncertainty: tuberculosis, substance use, and pathways to health in South Africa. The lives of the DP Marais patients are messy. Their backstories often share common threads of cramped living conditions, unstable or unsafe work, poor diet, and in the case of women, domestic violence. DP Marais admits these patients through its gates, which are branded by a sign reading ‘TB is curable when you complete your treatment’. However, the histories and futures of the patients within those gates do not reflect the simplicity of this statement. As Versfeld puts it, within the gates of DP Marais, “care efforts […] are framed within biomedicine but respond to social complexities”.
The social complexity that she focuses on in Making uncertainty is that of TB and drug-use, that interact in shaping health outcomes. Versfeld presents the layers of history that have contributed to South Africa’s unique social landscape. TB infections bloomed to epidemic proportions in South Africa throughout the 1900s, in part “imported into the country on the European coattails of the wealthy” who sought “climatic cure” for pulmonary diseases at luxury recovery institutions. As previously unexposed Black communities developed high rates of TB, they were moved to the outskirts of the cities, segregation that was only exacerbated by apartheid and ongoing systemic racism. Drug use thrives in these same communities. When discussing drug-use patterns with teenage girls, one theorised that “perhaps now it is the tik season, then the alcohol season, that’s how it goes, every drug has its day”. In the period that Versfeld documents, she found that 71% of patients at DP Marais were substance users. People who use substances face increased TB transmission rates, are more likely to develop active TB, and often avoid starting, interrupt, or don’t complete treatment. Versfeld presents readers with the lived experiences of patients as they navigate TB treatment alongside addiction recovery programmes. One such story belongs to Babalwa, born into poverty and orphaned. In Babalwa’s adult life she was victim of abusive relationships, contracted both HIV and TB, faced starvation, and eventually sought an escape through heavy drinking. When asked to speak in substance use awareness sessions, Babalwa repeats this statement: “I want to leave the bad thing I was doing. I want to be a mother and father to my children because I don’t have any family”. Babalwa’s story is littered with risk factors for TB spread and development, but she places blame and shame squarely on herself.
Throughout the book, Versfeld grapples with how judgement of substance use interacts with hospital dynamics. She acknowledges care givers’ frustration in dealing with “unruly patients” who put their health at risk, don’t stick to treatment plans, and undermine care providers’ efforts. These care providers are all too aware of the lives that patients have left behind and accordingly offer practical assistance. They ensure that discharged patients have a home to return to, work to recommence, and documentation that facilitates social grants. All these efforts are made knowing that this piece-meal approach offers flimsy protection from the pervasive forces of poverty and drug-use that patients will return to.
For patients who use substances, DP Marais runs compulsory substance awareness classes. Versfeld heavily critiques the Alcoholics Anonymous principles that shape these classes and set substance abstinence as the only possible road to recovery. She states that “rather than providing the tools for reduced use and treatment completion, the assumed binary between use and abstinence set conditions for failure”, not to mention internalised feelings of shame. Instead, Versfeld is a proponent of harm reduction and she documents the “shift away from morally infused conceptions of substance use as inherently wrong, towards recognition of substance use as a response to social marginalisation.” She leads a team focused on improving care for TB-substance use copresence and working alongside patients to ensure that they complete TB treatment irrespective of their substance use patterns. Despite initial reluctance to move towards a harm reduction approach, Versfeld describes how occupational therapist Soraya “realis[es] that her wish [of abstinence] was impossible, out of line with the realities of the harsh lives patients lived”. She goes on to describe how rather than enforcing the unattainable, “we can create an environment where [patients] are not being judged and labelled […] so that they can approach us and together we can find ways for them to cope through all their life struggles and difficulties to complete their treatment”.
Versfeld distils the complex mess generated by the intersection of TB and drug-use at both a societal and an individual level with startling clarity and brevity. Her message rings throughout the book: there is hope for patients presenting this co-constitution, we just need to meet them halfway.
Phoebe Ashley-Norman