Wei Jingsheng Foundation News and Article Release Issue: A828-W528

魏京生基金会新闻与文章发布号: A828-W528

 

Release Date: July 13, 2014

发布日:2014年7月13日

 

Topic: The Human and Social Cost Behind Money-Making (Wei Jingsheng's health issues illustrate some problems with America's medical and drug industries) -- Ciping Huang

标题:赚钱背后的人道与社会成本(从魏京生的健康问题,看美国医疗和药品业的一些问题) -- 黄慈萍

 

Original Language Version: English (Chinese version at the end)

此号以英文为准(英文在前,中文在后)

 

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The Human and Social Cost Behind Money-Making

(Wei Jingsheng's health issues illustrate some problems with America's medical and drug industries)

-- Ciping Huang

 

 

As soon as I got a full-time job in the 1980's, I started to use my savings to buy a lot of stocks, especially in the medical and drug industries.  In the 1990's, these stocks performed very well with excellent profits.  I considered the medical industry as a contribution to the human race, rather than realizing the human and social cost behind some of these profits.

 

I always have had very good health insurance without much health problems, so it hasn't been easy for me to know people on the other side.

 

In 1997, Wei Jingsheng was released due to international pressure.  He was transported directly from his Chinese jail to America in the name of medical parole.  When I met with him I noticed that he often complained of pain, but it was always only resolved with Chinese medical ways.  In 2000, I was surprised to learn that he did not even have medical insurance, so I decided to help him get a policy.  Then I was shocked to learn that due to his illness and medical condition, American health insurance would cost almost $1,000 a month, which he would not be able to afford, along with additional co-pay and deductibles.  Not only that the insurance companies were not willing to sell health insurance to him.

 

After several unsuccessful tries, I had to give up the idea of getting him that needed insurance.  In 2001, I found some time and paid for full-scale medical exams.  That was his only full-scale medical check up in the past 13 years.

 

Before then, I was working in the automatic inspection and control industry with an income more than 10 times higher than now.  My excellent design and problem solving skills won me a lot of perks and freedom from the company I worked for, such as flexible hours and days, more than one month long vocation time, free vehicle with paid gasoline, etc.  So it was not that difficult for me to help Wei Jingsheng.  A couple of years later, when I noticed that his vision had some problems, I brought him for an eye exam and got him some eye glasses which he is still using now despite changes in his eye sight in the past decade.  However, I have not be able to afford medical attention for him in recent years.

 

His teeth were not doing well either.  The bad nutrition and lack of sunlight during his long imprisonment for his proposal of the "Fifth Modernization - Democracy" resulted him losing most of his teeth in the prison, with only 5 teeth left.

 

About 5 years ago, Wei Jingsheng had to replace his old dentures of more than ten years, which cost several thousand dollars and took him several months saving to pay for it.  The old dentures had not only caused him difficulty to eat, they even fell off when he was talking during TV interviews.  Thanks to the reporters who did not show these embarrassing moments of him, but I had joked to sell these funny videos to raise money for his medical needs.  The videos are funny but the situation was not.

 

In dealing with his medical problems, Wei Jingsheng had to pay for his medicines out of his own pocket.  The medicine cost skyrocketed as the stock price for the drug companies soared.  For the last few years, the yearly total of medicines Wei Jingsheng had to pay was more than $8,000, which consumed all his remaining income.  But some of these drugs were not that expensive and should not be that expensive to start with.

 

As an example, ten years ago one medicine Wei Jingsheng used only cost 8 cents per dose.  It was an herb medicine ancient humans used more than 3,500 years ago.  Even more than 2,000 years ago, its extract was already used to treat that kind of illness.  Almost 200 years ago, French chemists isolated its chemical agent successfully.

 

So when 6 or 7 years ago I noticed this medicine price went up to 50 cents per dose, I was shocked.  A couple of years later, the price went up again with FDA approval and an exclusive marketing agreement to a drug company which was even given 100 millions dollars of taxpayers' money.  In return, the drug company gave the FDA 45 million dollars back as "the application fee".

 

By now, this medicine developed by ancient people thousands of years ago cost more than $9 dollars per dose, more than 100 times more than it was a decade ago!  Thanks to the FDA and stockholders of this drug firm, which kind of monopoly is the FDA making with the authority of the government without paying any royalty to ancient inventors?

 

So since last year, I have been talking about growing this plant myself that people have been cultivating for thousands of years.  If so, I could save thousands of dollars of medicine for Wei Jingsheng and avoid the pain he suffers.  Unfortunately, his hospitalization ruined my spring planting plan.  Instead, he decided not to use this medicine if possible.  But it is not working.  Each time I see how painful he is and decide to contribute involuntarily to the FDA and this drug company for more than $9 a day, I get very upset.

 

Yet, at least the cost of medicine could be estimated, but not the cost of hospitalization in the USA.  So as soon as the news of ObamaCare came out, I tried to sign Wei up immediately.  However, the websites and all the other support mechanisms was totally unmanageable, to the degree that I think it was worse than what the news media reported.  For several months since 2013, I tried many times to get him the insurance he needed yet was unable to do so.  Eventually, what I most worried about happened earlier this year.

 

At the beginning of February, we had a busy week in Washington DC.  That was a flu season, when 3 out of 10 groups of people we met with had someone with flu.  After I returned to Ohio on Feb. 11, I got sick with a fever and learned Wei Jingsheng got sick too with similar symptoms.  However, soon I recovered but he remained ill.  Concerned, I made a special trip to Washington DC at the end of February for one day to check him out despite my own very busy schedule during that period.

 

Wei Jingsheng seemed to have the flu and the doctor thought so too.  So I bought him 10 days supplies of food and left.  When I returned to Washington DC one week later on March 8, I noticed that he had poor appetite and lost some weight.  He was also feverish and unable to get out of bed most of time.  But indeed all the symptoms looked like flu.  So I asked him to visit the doctor again and took him for some simple medical tests which all came back normal.  I bought an air ticket leaving Washington on March 19.

 

On March 18, we had a last meeting scheduled in downtown Washington DC.  I noticed that he was not as oriented as before and we were unable to find the meeting place.  It also took him a long time to walk the one block from the parking garage to the meeting location in the cold.  We were a half hour late.  He seemed to be normal, but I thought him as a zombie.  

 

On March 19, I insisted to get Wei Jingsheng some more sophisticated tests to find out why he was so sick.  I told him that my financial situation had improved recently and could help him to get these tests done.  We had more exams that still had normal results.  With the help of the doctor, we were able to find a lab to have more tests, especially a CT scan scheduled immediately for the next day - it was more expensive but I thought it would be good, as an optical engineer who had worked in this type of technology.  I had to waste my air ticket on that day and bought another air ticket to leave on March 22.

 

On March 20, I brought Wei Jingsheng for the CT scan and still hoped that he was not seriously ill.  On March 21, I went to the Chinese super market to buy his favorite food to eat during my absence while anxiously waiting for the test results.  The results finally came back with the initial diagnosis as a late stage liver cancer.  There is no way to describe the devastating shock I had when I heard about it.  I was told that there was a 8 cm long shadow over his liver.  "Are you talking about 8 mm?" I asked in disbelief.  "No, it is 8 cm." I was told.  That was indeed the result in the image that I have looked at many times later in disbelief.

 

It was a big struggle for me to drive back and I even made an unusual detour on my way.  I hoped to smooth my mood but was unable to.  When I arrived, I saw Wei Jingsheng was out of bed and waiting for me at door.  He had just finished his last interview before his hospitalization.  The last question of that interview by Lyon Capitale was: "You will soon be 64 years old.  You were imprisoned in October 1979 for writings in which you called for democracy in China.  After 18 years in prison, and nearly as many years in forced exile since your release in 1997, are you still hopeful that you will one day be able to return to your country?"  In his illness, Wei Jingsheng replied short: "Of course, the longer I am outside China, the more I want to go home.  However, there are such enthusiastic friends in Lyon and elsewhere they make me sometimes forget to go home."

 

I always had confidence that Wei Jingsheng will be able to return to China one day, but at that moment, I suddenly had my doubt and was struck by a great sadness.  I even thought this last interview was very symbolic.

 

In great sadness, I tried to find a way to tell him what I just leaned of the test results and initial diagnostics.  Instead, I started to talk about some trivial and irrelevant things.  Then I told him the truth.  There was only a short moment of silence then he said: "But I do not feel the pain, if it is late stage liver cancer."  Both his mother and my father died of liver cancer.

 

After a couple of consultations, we decided to go to the emergency room immediately.  It took me almost 2 hours to reach the hospital in that late afternoon Friday traffic of Washington DC metro area.  We sat in the hospital for almost 7 hours when finally Wei said that he did not have strength to sit there anymore.  I exploded and yelled at the nurses and they got him to a bed.  By the time we finally settled in the hospital, it was already 4:30 AM on Saturday March 22.  I knew that I would not be able to leave in my scheduled flight that day.

 

It took the hospital 5 days to finally diagnose the problem correctly and confirm his illness, which is not late stage liver cancer.  This uncommon illness only happens a few out of 100,000 population.  The acute illness has 100% fatality when it is untreated.  However, if treated properly and in time, the recovery could be almost 100%.  The doctors immediately started the needed surgical procedures and medications.  These were very good doctors both in their profession and interactions.  But by then, Wei Jingsheng has lost a lot of weight without much food intake.  For several days, he was relying on an IV to sustain his life.  When he checked out of the hospital 4 weeks later, he had lost 40 pounds.

 

This year, as I became more and more concerned of his health, my effort to sign Wei Jingsheng up for a health care policy became more and more intensive.  Finally by getting up at 4 AM that morning in March and making more than 4 long phone calls, I was able to sign him up for a Blue Cross/Blue Shield plan at more than 50% discount.  However, the insurance itself still cost more than $400 per month and it would not be effective until May 1, 2014.

 

Because he had no health insurance at the time he was hospitalized, there were two attempts by the hospital to get him out, but fortunately they were stopped in time.  It was scary to think what the hospital bill would be after four weeks of hospitalization.  In 2009, I was hit by some car and hospitalized for two days, which resulted in $35,000 in bills.  So the first thing when I returned home at the end of April I applied for a home equity loan immediately, which obviously still would not be enough to cover his hospital bills.

 

Fortunately, after a lot of work and help from many including Maryland medical assistance, Wei would get the majority part of his hospital bills covered.  But the arrangement since May is even more confusing.  His most needed and scheduled re-exams since coming out of the hospital, including CT scans, were cancelled due to "improper insurance".  Some of his very needed medications are not allowed by the insurance unless he has "pre-authorization", because of the ridiculous price hike I described earlier.  I have decided to pay for this medication as needed but how long it will be like this?

 

In the latest bills of May he has received, I see that the insurance only covered about 1/3 of the cost, so 2/3 still needs to be paid.  That will be something unmanageable, but for now I am happy that his life is saved and his health is recovering.

 

For the last a few months, I have been thought a lot of "what if's".  I had wished that Wei Jingsheng had health insurance and his illness was correctly diagnosed earlier.  If so he would not have suffered that much and would not have stayed in the hospital that long time.  That kind of human and social cost was not necessary indeed.  Behind these misfortunes, I see systematic problems and causes in association.

 

On the bright side, we received overwhelming care and help that moved us deeply.  The sentiment and appreciation from our friends and supporters shown at this time of difficult surely encouraged us to carry on what we have been doing while keeping our good health.  Hereby, I want to take this opportunity to express gratitude to all our friends and supporters for showing your sympathy and help.  Together, let us making a better world.

 

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中文版

 

Wei Jingsheng Foundation News and Article Release Issue: A828-W528

魏京生基金会新闻与文章发布号: A828-W528

 

Release Date: July 13, 2014

发布日:2014年7月13日

 

Topic: The Human and Social Cost Behind Money-Making (Wei Jingsheng's health issues illustrate some problems with America's medical and drug industries) -- Ciping Huang

标题:赚钱背后的人道与社会成本(从魏京生的健康问题,看美国医疗和药品业的一些问题) -- 黄慈萍

 

Original Language Version: English (Chinese version at the end)

此号以英文为准(英文在前,中文在后)

 

如有中文乱码问题,请与我们联系或访问:

http://www.weijingsheng.org/report/report2014/report2014-07/HuangCP140713WeiJSillnessA828-W528.htm

 

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赚钱背后的人道与社会成本(从魏京生的健康问题,看美国医疗和药品业的一些问题)

-- 黄慈萍

 

 

从我在1980年代开始全职工作起,我就用我的储蓄买了很多包括医疗和药品业的股票。在20世纪90年代,这些股票非常出色,股价飞涨。我一直认为那是医疗行业对人类的贡献,却没有意识到那些利润背后的人道与社会成本。

 

这许多年来,我本人一直有很好的医疗保险也没有太多的健康问题,别人在这方面的困难也就不是那么显而易见的。

 

1997年,在国际压力下,魏京生被释放并以保外就医的名义从中国监狱直接送到美国。当我见到他,我注意到他似乎有浑身的病痛却只依赖于中医草药的解决方式。2000年,我很惊讶地得知他甚至没有医疗保险,所以我决定帮助他买一个。然而,我很震惊地发现由于他的病情和身体状况,他的健康保险费用将高达每月近千元。再加上额外的共付费和免赔费,他是不可能承受这笔开销的。不仅如此,保险公司也不愿意把健康保险卖给他。

 

在不成功地尝试了几次后,我不得不放弃了给他买健康保险的念头。2001年,我掏钱帮他做了一个全面的体检。这是他过去13年来唯一的一次全面体检。

 

那时候,我在自动控制与检验工业工作的收入比现在高出10倍以上。公司老板为了留住擅长设计和解决问题的我,还给了我很多其它的优惠如灵活的工作时间和天数、超过一个月长的假期、免费的车辆与汽油等,所以那笔支出并不困难。没两年,我又注意到他的视力有些问题。我帮他作了视力检查并配了眼镜。这副眼镜他至今还使用着,尽管他十年来视力又有所变化。

 

他的牙齿情况也不好。他提出了“第五个现代化 - 民主及其它”的结果,是营养不佳和缺乏阳光的漫长监禁。在狱中,年纪轻轻的魏京生失去了大部分牙齿,现在只有5颗真牙。

 

四、五年前,魏京生不得不花费好几个月储蓄的数千美元来配置一副新的假牙。他那副十多年的假牙不但造成咀嚼困难,还在接受电视采访时几次掉了下来。还好,记者们并没有采用那些尴尬的镜头。但我说过以后要出售这些滑稽的视频,来为他的医疗需求筹集资金。的确,那些视频挺可笑,但实际情况却一点也不可笑。

 

必须的医药费,是魏京生的巨大负担。制药公司股票飞涨之时,药品价格也在暴涨。在过去的几年中,魏京生每年必须付出的医药费高达八千多美元。这使得他每年没有任何积蓄。但相当的一部分药是不应该贵的,最起码本来是不贵的。

 

比方说,魏京生用的一种药十年前一粒只要8美分。这本是古人3500前就发现的草药。两千多年前,人类已能将该草药精炼并用于治疗这种病。近200年前,法国化学家将它成功分离并确认其化学结构。

 

因此,六、七年前,我非常震惊地注意到了这个药的价突然上升到每粒50美分。几年后,这个被古人用了几千年的药被美国食品药品监督管理局批准并容许某公司独家销售后,该药价再次狂涨。令人咋舌之处是,与此同时,美国食品药品监督管理局将美国纳税人的一亿美元给了该制药公司做“相关研究”。而该制药公司则将其中的四千五百万美元作为“申请费”还给了美国食品药品监督管理局。

 

如今,该制药公司贪古人功为己有,以每粒9美元多的价钱出售该药品。这是比十年前的8美分超过100多倍的价格!没有美国食品药品监督管理局的帮助,这家药物公司哪里能成为这样一个将几千年相关的人类智慧独自垄断的大肥猫?

 

从去年起,我一直在考虑培植这个人类已培养了几千年的植物。那样的话,我可以帮魏京生省下每年好几千美元的药费,避免他不必遭受的痛苦。不幸的是,他的住院破坏了我春天的种植计划。他打算不使用这种药,但没有用药的结果是痛苦。

 

但毕竟,正常药费是可估计的,而在美国住院的花费是更可怕的。所以在奥巴马医改刚开始时,我也颇受鼓舞,并立即着手帮魏京生加入医保。然而,相关的医保网站和其它支持机制不可用的情况比新闻媒体报道得还要糟糕。在2013年结束前的几个月里,我曾试尝多次也未能如愿。果然,我最担心的事情终于发生了。

 

那是在今年二月初的第一周,我们在华盛顿忙得焦头烂额。正是流感季节,我们见的十拨人里有三拨人中正生着病。我在2月11日回到俄亥俄州之后就生病发烧,并得知魏京生也病了。不过,我很快就康复,但他仍然还病着。二月底,疑心的我在百忙之中专程飞抵华盛顿一天去探望他,并给无法外出的他买了些食物。

 

当时看起来仅仅是流感。医生也这样认为。但当我在一周后的3月8日又回到华盛顿时,我注意到他食欲不振并发着烧。大部分的时间,他无法下床。但所有的症状看起来都像流感。我带他再次看了医生,并作了一些简单的医疗检查,所有结果都正常。于是我买了3月19日离开华盛顿的机票。

 

3月18日,我们在华盛顿特区市中心参加了最后一次工作会议。我注意到魏京生的方向感远不如平时,找不到会议地点。寒风中,他举步艰难,勉强走完了从停车场到会议地点的一个街区。我们到达太晚了,让5位与会者整整等了半小时。他貌似正常,但我觉得他已失去自我。

 

3月19日,我坚持要求魏京生做更多的检查,搞清他的病况。我安慰他,最近我的经济状况有所改善,可以帮助他支付有关费用。在医生的帮助下,我们找到一个可以尽快进行体检的地方,并马上安排在第二天做身体的计算机断层成像检查 -- 这会比较贵,但曾在此区域作光学工程的我认为这种检查会比较有效和可靠。为了带他去做这个检查,我不得不浪费已经购买的19号的机票,又买了一张3月22日离开华盛顿的机票。

 

3月20日,我带着魏京生去做计算机断层成像时还希望他得的并不是重病。3月21日,我去中国超市购买他喜欢的食物并焦急地等待测试结果。结果终于回来了:初步诊断为晚期肝癌。没有言语能够描述我听到这几个毁灭性词汇时的震撼。我被告知,在他的肝脏上有8厘米多长的阴影。“你是在说8毫米吗?”我不可置信地问。“不,的确是8厘米。”这是确实的。在那之后,我多次查看了相关的图像。

 

那之后的一系列事件至今仍历历在目:我熟悉的路变得那么漫长而又艰难;我走了不同寻常的弯路;我无望地想将自己的心情平静下来。当我终于到达时,我看到了已经下床并在门口等待我的魏京生。他刚刚完成了他入院前的最后一次采访。那是《里昂首都》的采访。它的最后一个问题是:“你很快就将64岁。你在1979年因你要求中国民主的文章而入狱。在18年的监禁和自1997年起被迫流亡的几乎同样多的岁月后,你是否还希望有一天能够返回自己的国家?”魏京生回答:“当然,离开得越久,就越想回家。不过,有里昂和其它各地那么热情的朋友们,有时候会忘记回家。”

 

我一直对魏京生回到中国充满信心,但在那一刻,我突然对此发生了怀疑并悲痛万分。我甚至觉得这个问答点出了不幸的现实。

 

巨大的悲伤笼罩下的我试图找到一种合适的方式来告诉他检查结果和初步的诊断。然而,我开始惧怕,谈论了一些琐碎而无关紧要的事情,然后才告诉他真相。片刻的沉默后,他冷静地说:“但我不感到疼痛。如果是肝癌晚期,那会很疼。”他的母亲和我的父亲都死于肝癌。

 

略经协商后,我们决定立即去急救室。周五下午的华盛顿严重堵车。我花了差不多2个小时才赶到医院。我们在等候室坐了近7小时。过了午夜,奄奄一息的他说已经没有力气坐在那里了。我开始暴跳如雷,终于叫来了护士让他躺在床上。尘埃落定终于入院时,已是周六,3月22日凌晨4点半了。我知道另一张机票又浪费了,我不可能在当天坐预定的航班离开。

 

整整5天之后,医院终于正确地诊断出他并非晚期肝癌的病情。他得的是每十万人口才有一个的不常见急性疾病。如果不及时治疗,该疾病的死亡率是百分之百。但如果治疗及时且得当,康复率也能是百分之百。专业并敬业的医生立即开始了必要的外科手术和药物治疗。但那时的魏京生已无法进食,靠葡萄糖维持生命。在他28天后离开医院时,他瘦了将近20公斤。

 

自今年元旦以来,出于对他的健康的担忧,我曾多次试图为魏京生购买医疗保健。在今年3月的一天,我在凌晨4点起床作准备并在之后打了4个超长的电话后,终于为他签下了2014年5月1日起生效的的蓝十字/蓝盾的医保计划。尽管有了超过50%的折扣,保险费仍然是每月四百多美元。

 

因为他住院的时候没有健康保险,有两次医院都试图将他赶出医院。的确,入院4周的医院帐单是可观的。在2009年,我被别人的车撞了并住院2天,总花费近三万五千美元。所以,当我四月底出院后回家的第一件事就是申请房屋净值贷款。但这显然仍不足以支付他的住院费。

 

幸运的是,经过许多努力和许多人的帮助,包括马里兰州的医疗援助,魏京生住院期间的大部分开销得到了解决。但五月之后的情况并不如意而且非常混乱。他出院后最需要并早已约好的复查包括应该作的计算机断层成像等因为“医保不合适”被取消。他平日的一些非常需要的药物也因缺少保险公司的“预授”而拿不到。那是因为我前面提到的荒谬的价格上涨情况所造成的。我想需要的话还是得自己花钱买这药,但这种情况将延续多久呢?

 

在我刚收到的他今年五月的账单上,我注意到医保公司只支付了总额的1/3,魏京生仍需支付余下的2/3。这些都是让人不愉快的情况。 但我还是很高兴,魏京生的命保住了,他的健康在恢复。

 

在过去的几个月,我常常会有很多“如果。。。”就会咋样的想法。我多么希望当时魏京生能有一个健康保险,使得他能及时看病并能更早地被正确诊断和治疗。那样的话,他就不至于遭受那么多罪,也不会在医院里住那么长一段时间。人和社会的成本本不该那么高。在这些不幸的背后,我看到的是相关的系统性的问题和原因。

 

也是在这几个不幸的月份里,我们见到了光明的一面。朋友们的关心和帮助使我们深受感动并起着实际的效果。尤其是在这困难的时刻,朋友们的关怀和赞赏更鼓励着我们以健康的身体,继续我们共同的事业。借此机会,谨向所有表达了同情和提供了帮助的朋友们表示诚挚感谢。有了你们,我们更有信心,世界会变得更美好。

 

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