The Plague of Our Time: The HIV/AIDS Epidemic | NEJM

Sheri Lewis a singer and AIDS educator has been HIV positive for almost 25 years great job I went for the blood test for my marriage license and 3 weeks later on April 12th 1987 my 33rd birthday 3 months before my wedding day the doctor called and told me on the phone that I was in fact positive cured at that time it was practically a death sentence once the first time I encountered patients with HIV was during my residency training in Boston in 1985 most of the patients had very Advanced disease and we didn't have any

treatment people didn't make it out of the hospital in the late spring of 1981 on my desk was the June 5th issue of morbidity and mortality weekly report five gay men from Los Angeles very very sick with a pneumonia that you only see in people who are immunosuppressed 1 month later was the second report of 26 individuals again curiously all gay men from La San Francisco and New York all presenting with this unusual syndrome of not only pyus pneumonia but several of them had capichi saroma and I can remember thinking my goodness this is something

really new and really scary Physicians even in infectious diseases and in Internal Medicine were quite afraid the first patient that was admitted the reaction of the staff to this individual was as if he were carrying small pux it was not recognized at all at the time of the New England Journal of Medicine paper in late 1981 for the potential seriousness of what it really was it was very frustrating because we were seeing multiple infections in a single individual in a fashion that was just overwhelming and disfiguring we had to deal with end of life issues

on a regular basis [Music] to make matters worse the disease carried a terrible social stigma because it was seen most commonly in gay men and IV drug users people would say well you know you deserve this for this terrible life that you're leading there was a lot of bad stuff there with regard to stigma intolerance insensitivity to what these people were going through the CDC established in 1982 that the virus was transmitted sexually and by infected blood to drug users and hemophiliacs but that didn't stop the speculation misinformation and fear people believe HIV was transmitted

by mosquitoes or toilet seats or by kissing or eating on utensils or drinking uh from people's water glasses all sorts of things in 1984 French and American researchers discovered the cause of AIDS it was a retrovirus they called human imuno deficiency virus or HIV that attacked the immune system and integrated into the Genome of our CD4 cells within a year a blood test for AIDS was developed it revealed that the virus could lay dormant for years suggesting that we were seeing just the tip of the iceberg even those of us who are in it from

day one were shocked by the uh enormity of the problem by this time AIDS was spreading exponentially in developing countries my first experience with HIV as a physician really happened when I was a medical student in uh 1986 I was shuttling between Harvard and Haiti at the time and the epidemic had hit the urban areas before we knew it you know we had patients of our our own from Central Haiti it was a very different epidemiology than what we saw in the United States AIDS was incapacitating to men and women and especially women it was

clear that it was more readily transmitted from men to women than women to men the stigma of AIDS was different in the developing world as well Way Beyond the question of its mode of transmission there is always a stigma associated with any wasting consumptive disease that takes young lives farmer and his colleagues at Partners in Health had to beg for resources to care for the AIDS patients and their families coming to his clinics people would say well you can't throw money at it well please you know throw some just cold Hard Cash because that can

bring in human resources and help build up Health Systems in spite of the evidence of the growing severity of the epidemic in the US and globally the federal government was slow to respond President Reagan didn't even mention the word for years and years and years thousands of people had died the gay and HIV infected communities mobilized to demand care and affordable access to the first HIV drug a the AIDS coalition to unleash power act up took to the streets [Applause] they did some outrageous things that are now part of the manual of activist activities if

you listened to what they were saying they were really making sense they were developing drugs and and those folks who stood the benefit the most from the drugs had no role of influence that process we decided that we were going to force them to know that we were there and as a result of that we put a face to a and we refuseed to go away and that really started off what turned out to be now intensive involvement of activists in virtually every phase of what we do with HIV AIDS dzt extended lives but drug

resistance always emerged by 1994 the number of AIDS cases in the US had surpassed 400,000 AIDS had become the leading cause of death in Americans ages 25 to 44 and pregnant women infected with the virus were passing it onto their babies one of the biggest breakthroughs in the history of HIV prevention is signified by age clinical trials group or actg 076 if you treat a pregnant woman with a during the pregnancy and during delivery and then treat the baby for a certain period of time you can dramatically decrease the likelihood of transmissibility the 076 trial

was a bit of a personal uh Epiphany for me because a lot of the debate back then was about prevention versus care [Music] the debate was where should we put our resources since we don't have treatment then we put them all into prevention but again that made it sound like we had good prevention Technologies which we didn't there was no vaccine the main prevention strategies included condoms which were usually controlled by men and so-called abstinence approaches so Along Comes 076 and' 076 is about a drug the use of a to prevent motherto child transmission introduced

HIV drugs to the developing world and was the first truly effective step in combating AIDS in resource poor settings but there was still no durable treatment Phil Wilson had been diagnosed with AIDS in 1982 there often days when I would spend the morning taking care of my partner followed by a doctor's appointment for my own health followed by visiting another friend in a hospice care followed by attending a funeral followed by a rally followed by preparing for a meeting with a policy maker or an elected official uh followed by taking care of my partner [Music]

again in the early researchers were making progress approaching the virus from multiple directions do one drug like a it was good for a short while to suppress the virus and then the virus figured out a way to escape it so it was very clear that we had to get combinations of different targets trials involving several anti-retroviral drugs targeting the virus's proteas enzyme began in the mid 90 s word of these promising agents spread rapidly through the HIV Community finally a string of breakthroughs the AIDS clinical trial group 320 was the first study to show the

full clinical benefit of Highly active anti-retroviral therapy heart while we were very actively clinically testing different combinations of drugs we reached the point where for the most most part the virus couldn't escape that you kind of boxed it in I was involved in some of these trials as a site investigator and when we started to see the patient's clinical status improving it wasn't so clear what was happening but after patients had been on the study for four to 6 months we really started to notice that nobody was getting sick many of us experienced that Lazarus

Syndrome where we were on death's door I was in the Intensive Care unit in a coma and the doctors had given me less than 24 hours to live I went on heart and got better and the rest I guess is history in the making I epitomize what happens when people with HIV have access to proper care and treatment but the drugs were expensive and it was hard to get them to the developing world so we went to the manufacturers of the drug and said you know give us a hand help us out and a number

of drug companies did get involved so we went from $10,000 per patient a year to about 12200 it wasn't until we went to the generic manufacturers and said we need not just thousands of people on care we need millions and that's what really permitted the scale up that's under $100 per patient per year those steps have have saved millions of [Music] lives I've had now a number of patients born with HIV who are adults and have children of their own and did not pass on HIV to their [Music] children there was no possibility of putting

millions of dying people on therapy without the global fund and pep far president's emergency plan for AIDS relief people were really surprised when the Bush Administration decided to launch the largest Global Health effort in History Dr Tony fouchy was working with the White House to make a plan but first it had to get past the Office of Management and budget he called a small group together including Paul Farmer to go to Washington to make the case he said I'm sending you in to the White House as my expert Witnesses and you know I thought that

sounds scary to me but um we knew what we were doing was right it's just that we had so experience and Tony knew that if pepar became a major program that we could break that cycle of poverty and disease and strengthen Health Systems which is not a very attractive sexy thing to fund but critical to the survival of lots of people with other problems Beyond AIDS the meeting was held in late 2002 when we said but we know it'll work we've already done it we have people who've come back from the dead and the White

House staff said well but that's because you're an infectious disease doctor and I said no no this is care delivered by community health workers and my Haitian colleagues I would say that that small cohort of first patients from Haiti had a big impact challenges remain in the developing world only half of the 14 million people infected with HIV who should receive anti retroviral therapy are actually getting it in Los Angeles 90% of Judy Courier's patients are doing well on their treatment Sheri Lewis started anti-retroviral therapy in 1997 when she began to have symptoms it changed

the direction of my life which of course was supposed to be a very short one but thankfully it's been a full life you know they've been everything some of the complications that we see in our patients who've had HIV for a long time are things like osteoporosis card vascular disease we're trying to sort out really to what extent these are due to the normal aging process or due to side effects of HIV medications or chronic HIV infection any other questions still the progress in the last 30 years is undeniable good the AIDS story is actually

a success story and I'm not sure everybody knows that it's a scientific success it's a development success success and it's a delivery success we've delivered the medicines now we haven't done it good well enough but I think it's huge that you have millions of people on therapy for a chronic disease that afflicts mostly poor people there's no other example of that yet [Music] for