HIV: the Early Days

              I opened my private practice: Internal Medicine and Family Practice, in a small town of about 1400 people in southern Delaware, in October 1980.  The first cases of homosexual men with pneumocystis pneumonia and severely depressed immune systems appeared in the medical literature in 1981.

              In 1982, I attended an infectious disease conference in Steamboat Springs, Colorado.  They discussed what was being called “gay bowel syndrome”, a term that was used then to describe a group of peri-anal and rectal problems seen more commonly in homosexual men.  The term is no longer used.  I don’t remember those patients with pneumocystis being discussed (of course, I did cut the lecture one day – it was a ski conference – ski all day, lectures from 3 to 8 pm – realized one day that I hadn’t had dinner in 4 days – that might have been the day they discussed the guys with PCP). 

              But by 1983, everyone was discussing them!  The immune suppression in gay men had acquired a name “Acquired Immune Deficiency Syndrome” (AIDS).  I went to a conference at University of Maryland to learn about the new disease.

              Prior to 1981, pneumocystis carinii pneumonia was very rare.  I saw one case during my residency, in a patient who was being treated for mycosis fungoides, a rare T-cell lymphoma.  PCP (now called PJP, but since this is past history, I’ll stick with the PCP designation) is caused by a protozoan, pneumocystis carinii (now pneumocystis jirovici – I swear the microbiology and fungal specialists feel compelled to change the names every couple of years just to confuse the medical doctors, in a “we know something you don’t know” game of one-up-man-ship).  Most of us carry the organism in our lungs without ever having a problem with it; it only causes pneumonia when a person’s helper T cell count (one kind of T lymphocyte, a white blood cell that helps us fight certain infections), which should be between 460 and 1600, is less than 200.  PCP isn’t contagious; the organism is everywhere and we all carry it.

              The patient I saw as a resident had his T cells wiped out by chemotherapy, and developed pneumonia that was resistant to all the powerful antibiotics.  PCP was suggested and I was asked to do a trans-tracheal aspiration (put a needle through his neck into his windpipe, squirt a little bit of fluid into the windpipe (trachea) and suck it out again) and have it checked for PCP.  I did the procedure but couldn’t find anyone at the lab who knew how to do the methenamine silver stain that was needed to detect the organism.  The patient was put on the antibiotic to treat PCP, but it was ineffective and he died.  At the conference we always did after a patient died, I was asked about the results of the methenamine silver stain, and pulled the trans-tracheal aspirate sample out my pocket.  I had never been able to find someone to do the stain.  That was the only case of PCP at Temple University Hospital in over 3 years.  They were about to see a lot more of it. 

              But no one understood why these gay men in San Francisco had T cell counts below 200.  Many of them had counts in the teens, or even single digits.  Why?

              The cases were reported to the CDC.  A team was formed.  They drew up a list of over 400 questions to ask the patients, looking for the cause of the immune suppression.  The patients were in the ICU at San Francisco General and the CDC team went to investigate.  They asked the questions of the patients with low T-cell counts and of matched controls: men who were also gay, the same ages, but not sick.  Several things correlated with being sick: the sicker patients were more likely to have had anonymous sex in bathhouses, had more sexual partners (over 300/year), were more likely to be the recipient partner in anal sex and were more likely to have used amyl nitrate (poppers – a drug that comes in small vials that are popped and inhaled and the time of orgasm, creating a prolonged orgasm and euphoria).

              Some researchers latched onto the amyl nitrate.  It would have been so wonderful if this was something as simple as a contaminated batch of drug.  No such luck! 

              By then cases were appearing in New York City, so the team went there.  Again, with the questions and the case-matched controls.  Again, three things correlated with being sick: bathhouses, number of partners, and receptive anal intercourse.  Amyl wasn’t as popular in New York.

              By then, cases were appearing in Washington, DC, so the CDC team went there.  The results were different!  The only thing that correlated with being sick in DC, was having sex with someone from San Francisco or New York!  Somewhere in all the this, the disease acquired a name: Acquired (because you get it, you’re not born with it) Immune Deficiency Syndrome.

              Similar patients began appearing in Amsterdam, and the CDC team was permitted to do their case-control study there.  The only correlation with being sick was having sex with someone from the United States.

              OK, so now they knew it was contagious.  That still didn’t prove that it was sexually transmitted.  Sexual partners are close in other ways too: they eat the same food, use the same bathroom, and breathe the same air.

              To prove sexual transmission, they needed family and household studies.  Household contacts of the sick patients had normal T cells, unless they were sexual partners.  So AIDS was a sexually transmitted disease.

              The CDC had to come up with definition of the disease, which had to be diagnosed clinically, because in 1983, we didn’t know the cause or have a test for the disease.  AIDS was diagnosed by the accompanying diseases that occurred because the T cell counts were low, what are called opportunistic infections.  PCP was the most common.  Next was probably Kaposi’s sarcoma, another exceedingly rare disease before AIDS.  Patients with Kaposi’s developed purple tumors in the skin all over their bodies.  There were multiple fungal infections, like oral and esophageal candida and cryptococcal meningitis, and parasitic diseases like toxoplasmosis, other cancers like Burkitt’s lymphoma, and certain presentations with no specific opportunistic infection identified, like wasting syndrome and AIDS dementia.  Lots of infections that were minor in people with intact immune systems, like the herpes that causes cold sores or the virus that causes genital warts, could cause life threatening problems in people with suppressed T-cell immunity. 

              All this information was presented in that conference at University of Maryland in 1983.  The moderator tried to end with optimism: “Come back next year and we’ll tell you what causes it and how to cure it”.  But as he was saying that, he noticed that Carleton Gadjusek was sitting in the audience, and called him up.  Carleton Gadjusek was a noted physician/researcher who won the Nobel prize for medicine in 1976 for his work on Kuru, which was originally considered a slow virus disease, a disease with a very long latency period between infection and the development of symptoms.  Later these diseases were found to be cause by prions, a misfolded protein that contains no genetic material.

              Dr. Gadjusek got up on stage and started talking about the history of mankind as the history of epidemics.  He talked about black plague, and how the world changed.  He talked about syphilis in the 1500s and the spread of syphilis and measles in the new world after Columbus.  He talked about cytomegalovirus salivary inclusion disease, which filled wards with infected babies in Europe before World War II.  After the war, the disease disappeared.  He pointed out how epidemics affect history and history affects epidemics.  He noted that there was only one epidemic for which an effective treatment was discovered during the epidemic.  That was the original Legionnaires’ disease epidemic in 1976 (I was 4^th year medical student and got to treat one of the patients who had attended the Legionnaires convention.) in which the severe pneumonia responded to erythromycin, an antibiotic that usually wouldn’t be used for life threatening pneumonia.  So he said, we might not have a cause or a cure the next year, or even in the next 10, but mankind had a long history of surviving its epidemics.

              Amazingly, we did have a cause by the next year, a virus that by 1986 was called Human Immunodeficiency Virus (HIV).  But before that, I had my first case! 

              I was chairman of the infection control committee for our little 104 bed hospital.  I was giving my first “AIDS 101” lecture to hospital employees about instituting universal precautions, when I got the call from the ER, “I think we’ve got our first AIDS case!  Do you want him?”  Of course I did!

              I’ll just call him Dino.  He was a Haitian migrant worker with pneumonia.  He had come from Belle Glade, Florida.  The places in the US with the highest incidence of HIV were San Francisco, New York and Belle Glade, the first two for the homosexual population and the third for Haitian migrant workers, who also had an increased incidence of the disease. 

              I treated Dino’s pneumonia presumptively with trimethoprim-sulfamethoxasole, the medicine used for PCP.  I still couldn’t get a definitive test done, but a routine sputum culture didn’t grow any pathogens.  His pneumonia responded.  He was also having terrible diarrhea.  Our gastroenterologist thought he needed to do a colonoscopy, though he didn’t want to.  He was terrified of the disease.  He ordered Kevlar, fluid impermeable suits and helmets, and wouldn’t do the colonoscopy till they arrived.  But he did it, with his wife assisting as his nurse, and me there wearing the usual infection control gown mask and gloves.  The procedure went smoothly, with samples and biopsies taken, until the clean-up.  After such a carefully sterile procedure, the nurse turned sharply, hitting the trap on the suction machine with her elbow and breaking off the plastic trap cup.  Liquid feces everywhere!  Dripping down doctor and nurse, all over the room.  No harm came from it, but it was the kind of thing that happens when you try to be too careful. 

              Dino was only 33 years old.   The life expectancy after being diagnosed with AIDS was 9 months in women, 14 months in men.  Many patients didn’t survive their first bout of PCP, but Dino did.  I had several talks with him before he was discharged trying to get him to understand that he had a potentially fatal sexually transmitted disease, and he needed not to give it to anyone else.  English was not his first language, and I wasn’t sure how much he really understood, but he looked at me, and in his Haitian Creole accent said “I am never going to have sex again!”

              Which is why it was a shock to me when he came to my office three weeks later for follow up and said “Congratulate me!  I’m engaged!”  He decided that he had caught AIDS from “some young woman in Belle Glade” and thought that if he found some nice, older woman, she would keep herself just for him and that would be OK.  The woman he had proposed to was someone I knew, an African American woman in her 50’s.  He wanted me to explain to her about the disease. 

              This time I called Delmarva Rural Ministries and got a Creole interpreter, so the meeting was with Dino, his intended bride, the interpreter, who was also female, and myself.  Fortunately, the couple both said that they had not had sex.  Dino repeated his comment about having “a nice older woman who would keep herself just for him”.  It was pretty clear with his girlfriend’s reaction that there wasn’t going to be a wedding.  I explained in great detail about condoms if he chose to have sex, and what was and wasn’t supposed to be “safe”.  Dino’s complexion was very dark, but I could swear he was even darker from blushing.  He got up and stood facing the door and facing away from us and said “Never have women talked to me like this!”

              His girlfriend was a generous woman.  She had taken her ex-husband in when he developed cancer and took care of him until he died.  She told Dino he could live on her sofa until he decided what he wanted to do.  What he wanted to do was go back to his family in Belle Glade.  So I did what we did then.  I went to one of the local churches and said I had an AIDS patient who wanted to go home before he died.  They took up a collection for a bus ticket.  Dino left for Belle Glade. 

              There was no treatment for AIDS back then.  The only thing that helped was Bactrim (Trimethoprim – Sulfamethoxasole) 1 tab daily or 1 double strength tab 3 times a week.  This would prevent the PCP.  The whole idea of prevention was a problem with the Haitian migrant population, as the translator from Delmarva Rural ministries explained to me.  The Haitians believed that sickness was due to being cursed.  They went to a folk doctor to have the curse removed.  Sometimes western medicine did a better job of removing the curse, either curing or at least relieving the symptoms, but with this understanding of disease, prevention makes no sense.  If the curse isn’t there, it just isn’t there.  There’s no point in taking a pill when you don’t have symptoms.  Which, I guess, is why I could never get Dino to take the Bactrim, except when he was actually sick. 

              I had this vision of all these people with AIDS riding buses all over the United States, heading to wherever they call home. 

              I gave the AIDS 101 talk in a number of places: hospitals, churches, doctor and dental meetings, schools.  I did it as a CSI investigation for my daughter’s 8^th grade class.  I spoke at an African-American church on a Saturday, not realizing their sabbath was on Saturday.  There I was in jeans, having just worked at the local library fair, and the women were wearing long gowns and the men tuxedos!  I wanted people to understand that they didn’t need to be afraid of people with HIV.  The contagion of the disease had to do with behavior.  It was transmitted by blood and body fluids, by sexual contact, sharing needles and blood transfusions.  It was not transmitted by casual contact, by drinking after people, by mosquitoes.  The evidence was quite clear on that from the beginning.

              The hardest thing was to convince the doctor or the dentist was that it’s not the AIDS patient they need to worry about.  It’s the patient who doesn’t know that he has it.  So-called “universal precautions” need to be applied universally.  It’s the one you don’t know, who doesn’t know that he has the disease, that will kill you!

              In 1986, the test became available for the HIV virus!  We could finally detect patients with the virus before they got sick.  Unfortunately, there wasn’t anything we could do about the virus yet.  We could put people on Bactrim to try to prevent the PCP, but there was nothing we could do for the virus itself.

              There was a lot of controversy in high risk populations about whether they should be tested.  People who tested positive were losing jobs, losing housing, losing friends.  If there was nothing you could do about it anyway, why be tested?

              Well, one reason is so you can show the test results to a potential sexual partner.  There were lots of people out there counselling people about “safe sex”: using condoms, avoiding anal sex, etc.  At one meeting I attended, those of us who counsel HIV patients about safe sex where asked for a show of hands: who would have sex with an HIV patient with a condom?  Very few hands went up.  After all, over the years condoms haven’t been all that effective at preventing pregnancy, and sperm is a lot bigger than the HIV virus (yes, I know it’s redundant to say HIV virus, since the V in HIV stands for virus, but it just seems appropriate).

              We all got in the occasional strange counselling situation.  I had a woman come to my office who had just been released after two years at the Delores J. Baylor Women’s Prison.  At that time, they were offered HIV testing on the way out the door, and she had had the test done.  She was released before the results were available.  When she got home to the 12 year old son she hadn’t seen much in the last two years, she thought they would get tattoos as a mother-son bonding thing.  She asked the tattoo artist to please use new needles, with all the HIV going around.  The tattooist said fine, but could he use the same needles on both of them?  She said he could.  Then she went first, so show her son how it was done.  Two days later, prison medical called her with positive test results.  She explained all this to me, but didn’t want her son to know why I was testing him for HIV.  I drew his test every 6 months x 3.  Fortunately he stayed negative. 

              My office was only 30 miles from Rehoboth Beach, Delaware, which had a significant gay population.  Somehow I ended up being one of the few doctors in Sussex County accepting HIV patients.  So I ended up with a little group of 25 patients.  One was a Rehoboth policeman.  He said he’d never served jury duty (I was trying to get out of it) because he always said “If that man is accused, some policeman investigated that, so he must be guilty.”  He was always excused.  I had one patient develop CMV (cytomegalovirus, the same virus that used to cause the salivary gland swelling in babies before World War II) retinopathy, leaving him blind, despite the IV medicine he was getting.  His partner brought him to see me every week, in their RV.  I had one non-gay patient who felt called to stand up in the waiting room and pronounce to all that he hadn’t gotten this disease because he was a fag, he got it from using IV drugs!  Like it mattered to me how he got it!

              Lance was the patient who made a difference.  Remember all those bus tickets?  The small towns in particular were glad to produce bus tickets and have their problems go elsewhere!  What changed local attitudes was one of their own coming home!  Everybody in town knew and loved Lance.  He had gone off to New York to become an actor.  He had been an extra in several movies (Ghostbusters, Working Girl, Moonstruck) and was a regular on a soap opera for 6 months.  Local boy made good!  Then he returned with AIDS.

              The AIDS patients in those early days were complicated.  They got one opportunistic infection after another.  Lance had about all the esophageal problems a person could have: candidiasis (a yeast infection), herpes (a viral infection) and, when the ulcerations in his esophagus were biopsied, some just grew HIV.  He could not swallow and was placed on TPN (total parenteral nutrition: receiving 100% of his nourishment through his IV tube).   But this didn’t keep Lance down: he trundled his IV tube everywhere: to football games, and high school plays and all the events of a small town.  He was known, accepted and loved, and changed the attitude of the whole town to people with HIV.  When Lance was in the hospital, dying, I finally understood why the people of the town thought their hospital was so terrible.  Lance’s stepfather said: “Lance will die in that room.  His father died down the hall.  My father died at the other end and my first wife across the hall.  How can we possibly like this place?”  I was a city kid.  If the people I loved died in the hospital, they died in one of many.  I didn’t have all the deaths in my life happen in the same place, as these people did. 

              There was sometimes a dementia associated with AIDS.  Lisa’s neighbors realized they hadn’t seen her in a week and got the police to help check on her.  She was in bed, covered in feces, totally confused.  To add to her confusion, Lisa was transgender, living as a woman.  She had taken hormones for years and had female breasts, but could never afford the surgery, so she still had male genitalia.  We could tell that she had grown up male: whenever you went into her room, her gown was off and her breasts uncovered.  Every woman who went into that room covered her breasts up, first thing.  No one who had grown up female would lie in bed that way.

              Lisa did not make sense when she talked.  She could not seem to remember anything.  She sometimes smeared feces on the wall.  But there was nothing to do about this and no reason she needed to be in an acute care hospital.  So I spoke to the hospital social worker, who laughed and said “So I’m going to call the local nursing homes and tell them I need a Medicaid bed, and a private room for an AIDS patient with dementia, with female breasts and male genitalia, who sometimes paints the room with feces.  I’m not going to find a bed for her anywhere in Sussex County, but it’s going to be fun trying!”

              Lisa died in the hospital three months later.  I saw her almost every day of those three months, since I didn’t want to ask anyone else to round on her.  However, when the hospital and my secretary submitted our respective bills to Medicaid, we were turned down.  Lisa’s real name was Albert, but she had signed Lisa on the hospital intake forms.  So the hospital and I had just provided three months of free care!  (The hospital protested for both of us, and we finally got some payment about 8 months later). 

              In 1987, there was finally treatment available fore the HIV itself.  A medicine called Zidovudine or AZT had been shown to prolong people’s lives.  Now there was reason to be tested and followed.  There was something you could do!

              I was following 25 AIDS patients in my office pretty regularly.  I was one of the few (or perhaps the only) doctor in the county interested in treating the disease.  Most of these patients were coming from Rehoboth Beach, driving 30 miles to see me.  Many of the ones who weren’t seeing me were driving 84 miles up to the clinic at Christiana Hospital.  I couldn’t handle more AIDS patients in my office.  I just had one secretary, and helping these patients find and keep housing and get medicine paid for was taking up a large part of her time.  I knew we needed a clinic downstate. 

              So I made an impassioned plea at a meeting of the Sussex County Medical Society for support for a downstate clinic.  I was shocked at the response, which was basically “They can be taken care of in Wilmington.  We have to deal with prisoners down here.  Let AIDS go up there”.   I walked out.

              Bottom line, of course, is it didn’t matter whether they wanted or would support a downstate clinic.  When the infectious disease providers at Christiana Hospital decided a downstate clinic was needed, they found a way to open one.  I was the downstate provider, and the infectious disease specialists would rotate each week.  We opened in September, and the estimate was that we would see 30 patients by the end of the year.  We saw 30 patients by the end of the first month!  The first week we had five scheduled.  Two of those ended up in jail but two others got out of jail and came instead.  I knew then, this was not going to be the same population as the patients in my office!

              We had clinic in the old chest clinic section of the county health department building.  Our waiting room was so narrow that people sitting across from each other had to interweave their knees!  There was no air conditioning.   We opened the door to the outside at the end of the corridor and planted a big fan there to blow air through the clinic.  Seemed like an infection control nightmare!

              In a few years they would build us a new clinic extension.  They asked me what I wanted.  I wanted isolation booths, like the ones on the old “$64,000 Question” so the groups of patients we saw couldn’t talk to each other.  There was the “Lambda Rising” group: gay men who hung out at the Lambda Rising bookstore at the beach.  They believed that HIV was developed in a government laboratory to rid the country of homosexuals and IV drug users, and AZT was a drug developed to hasten that objective.  They only came to clinic to see how they were: to have their blood tests done and make sure they had not developed AIDS (now defined as having a CD4 count (helper T cells) less than 200).  They believed they could stay healthy if they ate right and had the right attitude.  If one of their own did cross the boundary into HIV, they would tell him it was because he didn’t truly believe that he could be well and defeat the virus.  Basically they kicked him when he was down. 

              I didn’t want that group talking to the new heterosexual HIV patients.  They were the most frightened.  Fear sometimes leads to odd decision making: the woman who decided that if she was going to die, she wanted to leave her second husband with a child of his own (she had a son by her first husband).  We talked about the risk that her husband would catch the disease while trying to get her pregnant, but she thought giving him a baby was more important than that risk.  We discussed the risk of the baby having HIV, to which she said, well, she wasn’t going to bring any sick baby home from the hospital.  She did get pregnant though, and miscarried (there was a high miscarriage rate in the HIV patients).  As she was being wheeled into the OR for a D&C, the gynecologist asked her if she wanted her tubes tied.  She said she would have to discuss that with her husband.  The gyn said “She’ll be back” and she was, 3 months later, pregnant again, and miscarried again. 

              There were the patients with piercings: the man with a piercing through foreskin and scrotum with a lock on it.  His boyfriend wore the key around his neck.  The lock, fastening foreskin to scrotum, made quite a bulge in his bicycle shorts.  There was the man with the pierced nipple that got infected.  It was so swollen it looked like it might be breast cancer.  I sent him up to a breast specialist in Wilmington, who cleaned out the infection.  I was changed his dressing when one of our nurses walked om, looked at this swollen red breast and said “Oh, I was going to have my nipple pierced but now I guess I won’t”. 

              In 1991 DDI, a new medication for HIV, was released.  The next one, DDC, came out in 1992.  Stavudine (dd4) came out in 1994.  We started to realize that the order in which the medicines were used made a difference.  It was starting to seem like it would now be a specialist’s disease.

              Meanwhile, I had closed my private practice in 1992.  I continued following my private HIV patients at the clinic and did my clinic rotation, though I was now working in the emergency room. .  But I realized the end of my treating HIV was coming.  More meds were coming out, and the order in which they were prescribed seemed to matter.  Plus, at the clinic, we were asked to accept and follow a woman they did not want to follow upstate.  The first time I saw her she said she was only there to get a note from me that her HIV was not a problem so she could get her daughter back.  The state had taken her daughter because she had sold the services of her 6 month old daughter to a pedophile so she could have money for crack cocaine.  When I refused to help her get her daughter back, I was royally and loudly cursed out.  In discussion with the team later, the social worker asked me to imagine how hard it was for that woman to come here, knowing that we knew what she had done!  All I could see was how awful the thing was that she had done.

              People are complicated.  We are not just the worst thing we have done nor the best; our lives are the total of the decisions we have made, the deeds we have done.  But this was the last straw, the thing I felt I could not deal with.

              It was time to move on.  Medication order and usage was getting more complicated.  The clinic needed more infectious disease specialist time.  The disease itself was slowly changing due to treatment, from its initial appearance as an acute fatal illness causing death within a year, to a chronic disease, with patients who have undetectable viral loads and normal CD4 counts 20 or 30 years after their initial diagnosis.  I would treat HIV again some years later in the prison system.  Before I retired I would see HIV as one of the great miracles of modern medicine.  I would also come to wonder if a cure was not available because the chronic management of HIV was so lucrative.  The early days of the HIV epidemic were over.