从美国到凉山，与疾病战斗的日子

文/Cedric P Cheung

译/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.

伍呷呼吸非常困难，她的胸腔痛苦地起伏着，她的脸上充满了恐惧。担忧也同时出现在围在她病床边的家人脸上。这是今天早上例行查房时的情景，那时我到抗病毒治疗关爱中心工作已经两年了。伍呷和其他昭觉县抗病毒治疗关爱中心的病人一样，都被确诊为艾滋病（HIV阳性）。伍呷是从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感染者都有着相似的命运。雪上加霜的是，伍呷的丈夫在他们两个幼小的孩子死于艾滋病后离家出走了。现在她因为发烧、咳嗽、呼吸困难被送进了医院。胸片结果和我们估计的一致，她有气胸和肺炎，如果不治疗，将在几小时后死去。

伍呷只是生活在中国的70多万HIV感染者之一。自32年前中国报告第一例HIV感染病例以来，HIV快速传播增长，尤其是在某些省份和某些特定群体，如静脉注射吸毒人员和男同性恋者。根据四川省凉山州政府的调查，在HIV的感染者中有10%是静脉注射吸毒人员。对此政府迅速采取大规模的措施来应对，特别启动了“四免一关怀”和“中国遏制与防治艾滋病计划”项目，为患者提供一整套的帮助，包括经济支持、免费HIV检测、咨询和抗病毒治疗。在十年间，成千上万的病患因此受益。其实只要病患坚持，抗病毒治疗是非常有效的，可以使他们像正常人一样过上健康的生活。另外一个巨大的好处就是接受治疗的病人基本上不会把病毒传染给其他人。但是很多病人自己无法负担高额的治疗费用，中国政府给患者提供的免费抗病毒治疗对抗击HIV起到了巨大的推动作用。

从美国到凉山州抗艾前线

为了应对HIV的迅速传播，凉山州于2012年在昭觉县人民医院成立了一个新的抗病毒治疗关爱中心，并且邀请几家非政府组织（NGO）参与工作，国际专业服务机构（MSI）就是其中的一家。国际专业服务机构是一家总部在香港的非营利机构，在四川和云南都有项目，依托专业服务人士，如医生、护师、教师、畜牧专家等参与到项目推进中。作为一名来自遥远的美国的医生，我是如何加入MSI，并且来到昭觉县人民医院的呢？

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.

我父亲的老家在广东，母亲来自澳门。他们在海外求学的时候相遇、相知、相恋。我在美国出生长大。从约翰·霍普金斯大学毕业以后，我继续在艾伯特·爱因斯坦医学院学习，并最终将主攻方向确定在传染病和HIV医学领域。我在医学院读书时遇到了我的太太，当时她在读儿科。我们一直拥有一个共同的愿望，就是作为志愿者用我们的专业技能去帮助那些需要帮助的人。2009年我们加入了MSI，带着我们两个年幼的孩子跨越太平洋来到四川成都。尽管我来自华裔家庭，但我的中文能力非常有限。因此我决定先在四川大学学习中文，以适应未来在中国的工作和生活，我在四川大学学习了三年。学习结束后，我们于2012年搬到了昭觉县，加入国际专业服务机构的团队，在抗病毒治疗关爱中心工作。

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.

这种合作使我们能够多方面参与关爱中心工作。我们一起工作的门诊关爱中心的顾问和护士支付了部分的薪水；我们和住院部的医生一同工作，并就诊断和治疗HIV相关的机会性感染病对这些医生进行培训；我们对门诊的顾问进行培训，他们主要负责为正在服用HIV药物的病患提供支持，以帮助他们坚持治疗；我们同护士们一起每月为病患和家属进行两次HIV相关知识的讲座。这些共同的工作和努力慢慢地取得了成果。最近5年，昭觉县抗病毒治疗关爱中心门诊从最初的几百名病人参与药物治疗，发展到几千人；住院部的病床从20张增加到100张，每年为几千名危重病人提供治疗和帮助。我们也走出去探访，教导病人和家属，发放手表和药盒帮助他们提高治疗的依存性。另外，在当地配合下，我们在国际刊物上发表了研究成果，研究显示使用中国政府提供的比较贵的新药取得了非常好的疗效。所有这些成果的取得离不开中国政府的努力以及改革开放的决心，正是开放促成了新的合作方式，也使我们这些外国专家能尽我们的绵薄之力与本地人一起携手抗击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.

关爱中心也致力于减少HIV病患所面临的歧视。中心接收所有需要帮助的病患，不管他们是否有经济能力负担。我们认为这一措施为HIV病患、家属以及其他人创建了一个更加和谐的社区环境。在政府的帮助下，昭觉县HIV门诊部在HIV病人开始进行药物治疗之前，为其提供免费的基础血液检测、心电图、X光胸片和腹部超声波检查。门诊还为病患提供每次到中心取药的路费，甚至在年末为每位坚持服药、实验结果显示HIV病毒得到控制的病人提供奖励。在过去的两年，中国的医疗保险完全覆盖了HIV病患的住院费用。中国政府的承诺和资金投入在这场抗击HIV的战役中起到了决定性的作用。

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.

为了HIV患者的快乐结局

你也许会问前面提到的伍呷，她后来情况如何？那天下午我们把她胸腔的气排出以减缓肺部的压力，她立刻就觉得舒服多了，呼吸也变得通畅了。然后我们给她使用抗生素，经过几天的治疗，她慢慢好起来，开始吃饭、走路，甚至又有了笑容。几周后她出院了，转到门诊并开始接受HIV药物治疗。几个月以后，我在门诊，一位妇女从旁经过叫住了我。“记得我吗？我是伍呷”。我几乎不相信自己的眼睛，她的体重恢复了很多，看起来非常健康，和以前判若两人！

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个快乐的结局。然而有些人因为害怕诊断结果，不愿意接受HIV检测，最终死于“不明原因”。有些人知道自己感染了HIV，但是不愿意接受治疗，他们担心治疗会使病情加重。还有些人服用了HIV药物，但服药过程断断续续，意味着他们的状况并没有得到改变。也有些人，他们在患艾滋病的末期才到医院，我们可以做的只能是减轻他们的痛苦。仍有一些人依然深陷在毒品中不能自拔以至于没有兴趣去照顾自己的健康。我的心常为那些无辜的HIV孤儿而流血，他们被留给亲戚照顾，所以很难进行复杂的HIV治疗。

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.

可喜的是我们也见证了许多成功的病例。阿比是一位年轻人，他修房时从房顶摔下来，伤到了脊柱，导致腰部以下瘫痪。由于不能活动，他的背部出现了大面积的褥疮，被送到了医院。在医院我们发现他是HIV感染者。在接二连三的打击下，阿比的妻子离开了他，他失去了最后的依靠，他一心求死。医生们请我们协助清理和治疗阿比的伤口。当我们给他治疗伤口时，我们也借此机会关心他心中的伤痛。经过长时间和许多的谈话，阿比最终重拾对生活的信心，并且决定接受HIV药物治疗。尽管他依然不能走路，需要坐轮椅，但总体来讲阿比变得强壮和健康了。他的褥疮几乎痊愈，HIV得到了控制，更重要的是他不再抑郁，常常面带笑容。现在他成了我们的模范学员，帮助并鼓励其他的HIV病患坚持服药。我们希望其他的病患都能像阿比一样，能走出HIV死亡的诅咒，并且愿意陪伴那些依然在诅咒中挣扎的人。

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.

我们的希望并不是空想。QX开始进行HIV药物治疗时出现了严重的头晕，这是药物引起的常见副作用。我们给她换了另外一种药物，她又出现了严重的腹泻。于是她停止服药，想要放弃希望，只想等死。但由于她是家里三个年幼孙辈的唯一依靠（她的儿子因吸毒而进了监狱，儿媳和儿子离了婚），她知道她必须为她的孙儿们活着。最后我们给她减少了药物剂量。幸运的是，这一次她没有出现太多的副作用，并且实验结果显示她的病情得到了控制。现在她非常快乐和感恩，并且愿意回来和其他的病人分享自己的经验，鼓励他们不要放弃，坚持治疗。QX的故事并不是个例。这些治疗成功的病人不仅改变了自己的生活，也改变了他们后代的生活。

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.

用关爱和信念构筑艾滋病患者的未来

有位母亲前两个孩子都感染了HIV，因为她怀孕时没有服用治疗HIV的药物。后来她怀上了第三个孩子，这次她主动来到了我们的门诊开始按时服用HIV药物。后来她生了一个男孩，妇幼保健院为她提供免费的奶粉，因为母乳会传输HIV。当几个月后婴儿的检测结果显示没有感染HIV时，我们心中充满了感恩和喜悦。我们希望每一个HIV患者的孩子都能脱离HIV的阴影，但事实并不都是如此。

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岁的HIV孤儿。几年前她的妈妈死于艾滋病，她的爸爸在很远的城市打工，由爷爷照顾她。爷爷很爱她，监督她服用HIV药物。因为她感到很累，病得厉害，爷爷就把她带到医院，我们诊断她是因服用HIV药物引发的贫血症。她需要输血，我们也为她调换了药物。住院期间，她一天天强壮起来，她的爷爷非常高兴，感谢医院的每一位医务人员对她的照顾。我们送给她一个粉色的兔子玩具，她非常开心。现在她即将就读学前班，是一个非常聪明的小女孩。我们祈祷所有的感染HIV的孩子们都能得到关爱和家人的照顾，像木洛的爷爷爱她一样。这是一份珍贵的礼物，没有金钱和药物可以代替。

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.

越来越多的HIV患者来到昭觉县医院接受治疗，治疗的依存性在提高，患者的健康在恢复，他们可以回去工作，照顾家庭，他们的孩子们也将不再成为孤儿。这些成果的取得离不开国家卫生健康委员会领导的远见卓识。作为一名医生，我感谢中国政府为彝族HIV感染者提供的救命药物和关怀；我也很感谢中国政府的改革开放，使我们有机会在昭觉县HIV关爱中心参与工作，尽自己的一份心和一份力。相信在大家的共同努力下，我们能给那些有需要的病患带来信念力量和希望。

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.