從美國到涼山，與疾病戰斗的日子

文/Cedric P Cheung

譯/Linda

Wuga was struggling to breathe. Every breath hurt her chest and she looked scared. Surrounding her bed was her family who also looked very worried as we came in her room for morning rounds. Wuga was HIV positive, as were all the patients in the ZJ HIV hospital where I had been working for 2 years at the time. She contracted it from her husband who, unknown to her, was a drug addict. He left her after their 2 infants died from AIDS. And now she was admitted to the hospital with fevers, coughing, and difficulty breathing. The chest x-ray report came back as we had suspected: PCP pneumonia with pneumothorax. Untreated she would die in a few hours.

伍呷呼吸非常困難，她的胸腔痛苦地起伏著，她的臉上充滿了恐懼。擔憂也同時出現在圍在她病床邊的家人臉上。這是今天早上例行查房時的情景，那時我到抗病毒治療關愛中心工作已經兩年了。伍呷和其他昭覺縣抗病毒治療關愛中心的病人一樣，都被確診為艾滋病（HIV陽性）。伍呷是從她的丈夫那里感染的HIV，她甚至不知道自己的丈夫吸毒。很多女性HIV感染者都有著相似的命運。雪上加霜的是，伍呷的丈夫在他們兩個幼小的孩子死于艾滋病后離家出走了。現在她因為發燒、咳嗽、呼吸困難被送進了醫院。胸片結果和我們估計的一致，她有氣胸和肺炎，如果不治療，將在幾小時后死去。

伍呷只是生活在中國的70多萬HIV感染者之一。自32年前中國報告第一例HIV感染病例以來，HIV快速傳播增長，尤其是在某些省份和某些特定群體，如靜脈注射吸毒人員和男同性戀者。根據四川省涼山州政府的調查，在HIV的感染者中有10%是靜脈注射吸毒人員。對此政府迅速采取大規模的措施來應對，特別啟動了“四免一關懷”和“中國遏制與防治艾滋病計劃”項目，為患者提供一整套的幫助，包括經濟支持、免費HIV檢測、咨詢和抗病毒治療。在十年間，成千上萬的病患因此受益。其實只要病患堅持，抗病毒治療是非常有效的，可以使他們像正常人一樣過上健康的生活。另外一個巨大的好處就是接受治療的病人基本上不會把病毒傳染給其他人。但是很多病人自己無法負擔高額的治療費用，中國政府給患者提供的免費抗病毒治療對抗擊HIV起到了巨大的推動作用。

從美國到涼山州抗艾前線

為了應對HIV的迅速傳播，涼山州于2012年在昭覺縣人民醫院成立了一個新的抗病毒治療關愛中心，并且邀請幾家非政府組織（NGO）參與工作，國際專業服務機構（MSI）就是其中的一家。國際專業服務機構是一家總部在香港的非營利機構，在四川和云南都有項目，依托專業服務人士，如醫生、護師、教師、畜牧專家等參與到項目推進中。作為一名來自遙遠的美國的醫生，我是如何加入MSI，并且來到昭覺縣人民醫院的呢？

Wuga is one of the over 700,000 people living with HIV in China. Since the first case in China 32 years ago, the epidemic has grown exponentially, with HIV patients mostly concentrated in certain provinces and certain risk groups such as intravenous drug users and male homosexuals. For instance, government surveys in Liangshanzhou in Sichuan province show up to 10% of the general population have HIV, mainly due to intravenous drug abuse. The government response has been rapid, comprehensive, and large scale. Programs specifically dealing with HIV such as Four Frees, One Care Policy and China Action Plan for HIV/AIDS Prevention and Control have benefitted hundreds of thousands of patients over a decade with a complete package of economic assistance, free HIV testing, counseling, and HIV treatment. HIV treatment is very effective, so long as the patient is adherent, and can allow them to live healthy productive lives like a normal person. As an added benefit, patients who are on treatment will basically not transmit the virus to others. However, these medications are extremely expensive and would be impossible for many patients to afford on their own. In response to the serious HIV epidemic in Liangshanzhou, the government in 2012 built a new HIV hospital in ZJ county and invited several NGOs to partner with them, among which MSI Professional Services was one. MSI is an international NGO based in Hong Kong doing developmental projects in Sichuan and Yunnan provinces using professionals such as doctors, nurses, teachers,agriculture specialists, etc. Let me tell you how I became involved with MSI and the ZJ HIV hospital.

我父親的老家在廣東，母親來自澳門。他們在海外求學的時候相遇、相知、相戀。我在美國出生長大。從約翰·霍普金斯大學畢業以后，我繼續在艾伯特·愛因斯坦醫學院學習，并最終將主攻方向確定在傳染病和HIV醫學領域。我在醫學院讀書時遇到了我的太太，當時她在讀兒科。我們一直擁有一個共同的愿望，就是作為志愿者用我們的專業技能去幫助那些需要幫助的人。2009年我們加入了MSI，帶著我們兩個年幼的孩子跨越太平洋來到四川成都。盡管我來自華裔家庭，但我的中文能力非常有限。因此我決定先在四川大學學習中文，以適應未來在中國的工作和生活，我在四川大學學習了三年。學習結束后，我們于2012年搬到了昭覺縣，加入國際專業服務機構的團隊，在抗病毒治療關愛中心工作。

My father is from Guangdong and my mother is from Macau. They met and married when they went abroad to study, so I was born and raised in the United States. After graduating from The Johns Hopkins University I studied medicine at Albert Einstein College of Medicine, and then finally specialized in infectious diseases and HIV medicine.I met my wife, who studied pediatrics, in medical school and we always knew we wanted to work as volunteers using our professional skills to help those in need. In 2009 we joined MSI, taking along our two small children and moved to Chengdu in Sichuan province. Although I grew up in a Chinese family, I had very limited Chinese language ability so I needed to study Putonghua at Sichuan University for three years. After finishing my studies in 2012, we moved to ZJ to be part of the MSI team working together with the new HIV hospital.

這種合作使我們能夠多方面參與關愛中心工作。我們一起工作的門診關愛中心的顧問和護士支付了部分的薪水；我們和住院部的醫生一同工作，并就診斷和治療HIV相關的機會性感染病對這些醫生進行培訓；我們對門診的顧問進行培訓，他們主要負責為正在服用HIV藥物的病患提供支持，以幫助他們堅持治療；我們同護士們一起每月為病患和家屬進行兩次HIV相關知識的講座。這些共同的工作和努力慢慢地取得了成果。最近5年，昭覺縣抗病毒治療關愛中心門診從最初的幾百名病人參與藥物治療，發展到幾千人；住院部的病床從20張增加到100張，每年為幾千名危重病人提供治療和幫助。我們也走出去探訪，教導病人和家屬，發放手表和藥盒幫助他們提高治療的依存性。另外，在當地配合下，我們在國際刊物上發表了研究成果，研究顯示使用中國政府提供的比較貴的新藥取得了非常好的療效。所有這些成果的取得離不開中國政府的努力以及改革開放的決心，正是開放促成了新的合作方式，也使我們這些外國專家能盡我們的綿薄之力與本地人一起攜手抗擊HIV。

This partnership not only provides a portion of the salary for the outpatient HIV counselors and nurses, but we also work with and train inpatient doctors to diagnose and treat HIV related opportunistic infections, we work with and train outpatient counselors providing support for patients taking HIV medication to increase adherence to treatment,and together with nurses we conduct weekly patient education events for patients and their family members. These efforts are bearing fruit. In the last 5 years the clinic has grown from a few hundred to a few thousand patients taking HIV medication. Likewise, the inpatient department has grown from 20 beds to over 100 beds, serving thousands of very sick patients every year. We have also educated thousands of patients and family members over this time and given out watches and pill boxes to improve adherence.Together, we have published research in an international journal showing the superior results of using newer but more expensive medications provided by the government for our patients compared to older medications.

關愛中心也致力于減少HIV病患所面臨的歧視。中心接收所有需要幫助的病患，不管他們是否有經濟能力負擔。我們認為這一措施為HIV病患、家屬以及其他人創建了一個更加和諧的社區環境。在政府的幫助下，昭覺縣HIV門診部在HIV病人開始進行藥物治療之前，為其提供免費的基礎血液檢測、心電圖、X光胸片和腹部超聲波檢查。門診還為病患提供每次到中心取藥的路費，甚至在年末為每位堅持服藥、實驗結果顯示HIV病毒得到控制的病人提供獎勵。在過去的兩年，中國的醫療保險完全覆蓋了HIV病患的住院費用。中國政府的承諾和資金投入在這場抗擊HIV的戰役中起到了決定性的作用。

Our hospital also works hard to reduce discrimination that HIV patients face by accepting all patients who need help without regard for ability to pay, creating a more harmonious society. With the support of the government, the clinic is able to provide free baseline blood laboratory tests, EKG,Chest X-ray, abdominal ultrasound before beginning HIV medication. The clinic also provides transportation money for patients coming to the clinic to pick up medication and even gives a year end reward to each patient whose lab tests show the HIV virus is under control. In the past 2 years the health insurance completely covers all inpatient costs for HIV patients who need to be admitted to the hospital.

為了HIV患者的快樂結局

你也許會問前面提到的伍呷，她后來情況如何？那天下午我們把她胸腔的氣排出以減緩肺部的壓力，她立刻就覺得舒服多了，呼吸也變得通暢了。然后我們給她使用抗生素，經過幾天的治療，她慢慢好起來，開始吃飯、走路，甚至又有了笑容。幾周后她出院了，轉到門診并開始接受HIV藥物治療。幾個月以后，我在門診，一位婦女從旁經過叫住了我。“記得我嗎？我是伍呷”。我幾乎不相信自己的眼睛，她的體重恢復了很多，看起來非常健康，和以前判若兩人！

What happened to Wuga from the beginning of the article?That afternoon we removed the air from her pleural space to relieve the pressure on her lung. She immediately felt better and began breathing easier. Next we started her on appropriate antibiotics and over the next few days she started eating, walking, and even laughing again. After a few weeks she improved so much she was discharged and went to the outpatient department to start HIV medication. A few months later I was in the clinic and walked by a woman who said, “Remember me? I’m Wuga!” I almost couldn’t believe it, she had gained so much lost weight back and looked so healthy I didn’t even recognize her!

我希望我故事中的每一位患者都有一個快樂的結局。然而有些人因為害怕診斷結果，不愿意接受HIV檢測，最終死于“不明原因”。有些人知道自己感染了HIV，但是不愿意接受治療，他們擔心治療會使病情加重。還有些人服用了HIV藥物，但服藥過程斷斷續續，意味著他們的狀況并沒有得到改變。也有些人，他們在患艾滋病的末期才到醫院，我們可以做的只能是減輕他們的痛苦。仍有一些人依然深陷在毒品中不能自拔以至于沒有興趣去照顧自己的健康。我的心常為那些無辜的HIV孤兒而流血，他們被留給親戚照顧，所以很難進行復雜的HIV治療。

Unfortunately not every story ends in success. Some people don’t want to get tested for HIV fearing the diagnosis and die of “unknown causes”. Some know they have HIV but don’t want to get treatment, scared it will make them feel even more sick. Some take HIV medication but only intermittently and so don’t improve. Some only come to the hospital in end stage AIDS, too late to reverse the course and we can only try to relieve their suffering. Some are still so entrapped by drug use they have no interest or energy to take care of their health. I feel the most pitiful are the innocent HIV orphans who are taken care of by relatives and may have difficulty complying with complex HIV treatment.

可喜的是我們也見證了許多成功的病例。阿比是一位年輕人，他修房時從房頂摔下來，傷到了脊柱，導致腰部以下癱瘓。由于不能活動，他的背部出現了大面積的褥瘡，被送到了醫院。在醫院我們發現他是HIV感染者。在接二連三的打擊下，阿比的妻子離開了他，他失去了最后的依靠，他一心求死。醫生們請我們協助清理和治療阿比的傷口。當我們給他治療傷口時，我們也借此機會關心他心中的傷痛。經過長時間和許多的談話，阿比最終重拾對生活的信心，并且決定接受HIV藥物治療。盡管他依然不能走路，需要坐輪椅，但總體來講阿比變得強壯和健康了。他的褥瘡幾乎痊愈，HIV得到了控制，更重要的是他不再抑郁，常常面帶笑容。現在他成了我們的模范學員，幫助并鼓勵其他的HIV病患堅持服藥。我們希望其他的病患都能像阿比一樣，能走出HIV死亡的詛咒，并且愿意陪伴那些依然在詛咒中掙扎的人。

Fortunately we have seen many successful cases. Abi is a young man who fell down from his roof while making repairs, injuring his spine that left him paralyzed below the waist. Because he was unable to move his legs, he developed a large pressure ulcer on his back, and went to hospital. While in the hospital he was also discovered to have HIV. Because of all this, his wife left him and he wanted to die. The doctors asked us to assist them to clean and treat his wound. Over time and after many discussions he finally had the will to live and wanted to start HIV medication. Despite the fact he still can not walk and needs to use a wheelchair, he is now overall much stronger and healthier, his wound is almost completely healed, his HIV is under control, and most importantly, his depression has been lifted and he is smiling all the time. He has now become one of our peer educators, helping and encouraging other HIV patients to take their medication.

我們的希望并不是空想。QX開始進行HIV藥物治療時出現了嚴重的頭暈，這是藥物引起的常見副作用。我們給她換了另外一種藥物，她又出現了嚴重的腹瀉。于是她停止服藥，想要放棄希望，只想等死。但由于她是家里三個年幼孫輩的唯一依靠（她的兒子因吸毒而進了監獄，兒媳和兒子離了婚），她知道她必須為她的孫兒們活著。最后我們給她減少了藥物劑量。幸運的是，這一次她沒有出現太多的副作用，并且實驗結果顯示她的病情得到了控制。現在她非常快樂和感恩，并且愿意回來和其他的病人分享自己的經驗，鼓勵他們不要放棄，堅持治療。QX的故事并不是個例。這些治療成功的病人不僅改變了自己的生活，也改變了他們后代的生活。

Quxi came to the clinic to start HIV medication but developed severe dizziness which is a common side effect. We switched her to another medication but she developed severe diarrhea. At this point she seemed to give up hope and stopped taking her medications, just wishing she would die. But because she is the only caregiver of her 3 young grandchildren (her son is in jail for drug abuse and his wife divorced him) she knew she had to keep on living for the sake of her grandchildren. Finally, we tried one more adjustment to her treatment, this time with a reduced dose of medication. Thankfully, she didn’t have any side effects and her lab tests have all come back showing that the HIV is under control. She is now very happy and thankful and has also come back to share her experience with other patients to not give up and to persevere in treatment.

用關愛和信念構筑艾滋病患者的未來

有位母親前兩個孩子都感染了HIV，因為她懷孕時沒有服用治療HIV的藥物。后來她懷上了第三個孩子，這次她主動來到了我們的門診開始按時服用HIV藥物。后來她生了一個男孩，婦幼保健院為她提供免費的奶粉，因為母乳會傳輸HIV。當幾個月后嬰兒的檢測結果顯示沒有感染HIV時，我們心中充滿了感恩和喜悅。我們希望每一個HIV患者的孩子都能脫離HIV的陰影，但事實并不都是如此。

Youguo was pregnant with her third child. Because she didn’t take HIV medication for the first 2 pregnancies, her first 2 children contracted HIV. This time she came in to our clinic and started HIV medication and took it faithfully.She gave birth to a boy and then went to Maternal and Children’s Hospital to get free milk powder (breastfeeding can transmit HIV). Thankfully the baby was tested months later and was found to not have HIV.

木洛是一名7歲的HIV孤兒。幾年前她的媽媽死于艾滋病，她的爸爸在很遠的城市打工，由爺爺照顧她。爺爺很愛她，監督她服用HIV藥物。因為她感到很累，病得厲害，爺爺就把她帶到醫院，我們診斷她是因服用HIV藥物引發的貧血癥。她需要輸血，我們也為她調換了藥物。住院期間，她一天天強壯起來，她的爺爺非常高興，感謝醫院的每一位醫務人員對她的照顧。我們送給她一個粉色的兔子玩具，她非常開心。現在她即將就讀學前班，是一個非常聰明的小女孩。我們祈禱所有的感染HIV的孩子們都能得到關愛和家人的照顧，像木洛的爺爺愛她一樣。這是一份珍貴的禮物，沒有金錢和藥物可以代替。

Muluo is a 7 years old orphan girl with HIV. Years ago her mother died from AIDS and her father is out working in a far-away city, so her grandfather takes care of her. He loves her very much and supervises her to take HIV medication.When she became very tired and ill he took her to the hospital where we diagnosed her with HIV medication related anemia. She needed a blood transfusion and switched her medication to another one. As she got stronger and stronger during the hospital stay her grandfather was very happy and thanked all the hospital staff for her care. We even gave her a pink stuffed rabbit toy which made her so happy. She is currently going to elementary school and is a very smart girl.

越來越多的HIV患者來到昭覺縣醫院接受治療，治療的依存性在提高，患者的健康在恢復，他們可以回去工作，照顧家庭，他們的孩子們也將不再成為孤兒。這些成果的取得離不開國家衛生健康委員會領導的遠見卓識。作為一名醫生，我感謝中國政府為彝族HIV感染者提供的救命藥物和關懷；我也很感謝中國政府的改革開放，使我們有機會在昭覺縣HIV關愛中心參與工作，盡自己的一份心和一份力。相信在大家的共同努力下，我們能給那些有需要的病患帶來信念力量和希望。

More and more patients are coming in for treatment, adherence is up, and health restored. Patients are able to go back to work, take care of their families, children are not becoming orphans. I thank China for reform and opening up to allow us to partner with the ZJ HIV hospital. On behalf of the Yi HIV patients and their families, I thank the government for providing life-saving medication and care. This success would be impossible without the visionary leadership from the central government and public health bureau.Together we are working to give our needy patients belief,ability, and hope.