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My past and future involvement with AIDS.

My first awareness of an unusual illness affecting patients was during medical school. One of my colleagues had just returned from a clinical rotation in New York City, where he had seen a case of Kaposi's sarcoma and Pneumocystis carinii (jiroveci) pneumonia. I remember thinking, "I'll never see these kinds of medical diagnoses."

Those were famous last words.

During my residency program in 1983, I experienced a needle stick while taking care of a patient with "Gay-Related Immune Deficiency" (GRID). I was focused on inserting a central line in a critically ill patient and did not notice the initial trauma. Even afterwards, I did not experience a sense of personal risk. We truly did not know what we were dealing with back then.

Unfortunately, many physicians, nurses, and hospital personnel were hostile and judgmental during the early stages of the epidemic. It was difficult to find consultants who would assist in the care of my patients. One particular moment was especially galling. A physician called me screaming, "How dare you send me THAT kind of patient! I thought we were friends. I have a family to take care of. Don't you ever call me again." He remains unnamed but not forgotten.

In 1986, I became aware of the potential for compassion, inspiration, and dedication within the Houston community. The Center for Immunological Diseases opened under the auspices of Dr. Peter Mansell. Although it was known as the "AIDS Hospital," a community of patients, physicians, nurses, social workers, and administrative staff came together with a central goal of healing and caring. No one was refused treatment because of an inability to pay. In 1987, the CDC held a conference in Atlanta, Georgia to discuss the results of a clinical study involving the use of AZT. On the day of the conference, 8 patients in that hospital died. This was perhaps my earliest low-point. The facility did not have an intensive care unit because a diagnosis of AIDS was a terminal illness. Patients succumbed rapidly in spite of our burgeoning "expert" knowledge. However, when Peter and Dr. Gary Brewton returned from the conference, we began to administer AZT and a new foundation of hope appeared. For the first time we saw the potential for partial immune recovery. Although AZT caused anemia, seizures, myopathy, and immune reconstitution syndrome, patients began to reverse their HIV wasting with subsequent improvement in their CD4 lymphocyte subsets.

Instead of patients dying within 6 months of their first AIDS diagnosis, they began to live 2, 3, 4 years longer. Instead of dying with CD4 counts of less than 200, they lived with CD4 counts of less than 50.

With prolonged suppression of immune function, we began to see new additional "opportunistic" infections including Cytomegalovirus (CMV), Mycobacterium avium intracellulare (MAI), Candida Esophagitis, Histoplasmosis, Toxoplasmosis, and Cryptosporidiosis. The vast majority of us had not received formal training in the management of these illnesses during our medical school or residency programs. We all learned how to handle these illnesses post-graduation. The patients taught us, and we taught each other.

As patients began to live longer, we then heard the societal and political cries about how expensive it was to treat HIV. Hospitals, insurance companies, politicians, physicians, and health experts emphatically stated that society could not afford to continue taking care of these individuals. Through necessity, we rapidly became ethicists and health policy experts. The gay community was an essential voice of advocacy for all populations affected by HIV. Through its organizational skills, oratory, wisdom, and political savvy, federal funding was designated based on demographic needs. The HIV scientific community was instrumental in the development of many new medications, many of which are now even standards of care for cancer and transplant patients. A partial list of these medications includes ciprofloxacin, erythropoietin, lamivudine (for the treatment of hepatitis B), fluconazole, ketoconazole, itraconazole, ganciclovir (to treat CMV), ribavirin and interferon (to treat hepatitis C), rifabutin (to treat MAI), and famciclovir (to treat Herpes Simplex). Because so many individuals were chronically immune suppressed, people were rapidly enrolled in clinical trials and became an essential foundation in the licensing of these medications.

The next turning point in the epidemic occurred in 1997 with the widespread availability of protease inhibitors. These medications used in combination with other antiretrovirals, namely the nucleoside and non-nucleoside reverse transcriptase inhibitors, truly changed HIV into a more chronic illness. Immune recovery became durable and sustainable. Our patients were able to return to work and no longer had to sell their life insurance policies to third party brokers known as "viatical settlement companies." In-patient hospitalizations diminished and the insurance companies began to pay for the combination "cocktail" therapy known as highly active antiretroviral therapy or HAART.

The downside of the successful re-integration of our patients into society has been their relative invisibility within the current epidemic. Societal factors still impact access to care for many patients living with HIV. Poverty remains a significant risk factor for the acquisition of HIV as well as a cause of premature death. The next generation has not witnessed the high frequency of death that we experienced 25 years ago. The availability of HAART in the US has diminished the sense of urgency about HIV/AIDS, and the emergence and anonymity of the Internet has fueled a resurgence of high-risk sexual behaviors. This is a different societal problem than specific high-risk behaviors that are driving the epidemic in other parts of the world.

Since 1998, my work in HIV/AIDS has been focused on Russia (Tomsk, Siberia, and Sakhalin). Russia, India, and China are 3 areas of the world with the fastest rising epidemics. In Russia, there are also co-epidemics of injection drug use and multi-drug-resistant tuberculosis. Since 1992, Russia has a declining population that is not solely attributable to HIV and tuberculosis. The death rate in Russia is 13 per 1000, and the birth rate is 8 per 1000. Only in the last 5 years have we seen the initial acceleration of the HIV/AIDS epidemic in that country. I am very frightened by the changing epidemiology in Tomsk. In the first 9 months of 2005, 62% of their new HIV cases have been in women. This represents a significant and rapid developmental change. Three years ago, less than 25% of their new cases were in women. With the assistance of the NIH, we have established an institutional review board (IRB) with an international "Federal Wide Assurance" number, creating a research infrastructure to examine this issue.

Estimates suggest that 1.2 million people are already infected with HIV in Russia. President Vladimir Putin has vowed to provide HAART for 15,000 people in 2005, and 30,000 people in 2006. This public health response is insufficient for many reasons. First and foremost, the dogma of stigmatization remains an integral political response for many government officials. For example, people are ineligible for HAART unless they have been drug-free for 6 months. And, because methadone and buprenorphine are illegal in the former Soviet Union, achieving sobriety remains a significant obstacle. The anticipation that HIV would rapidly die out in the intravenous drug-using population and subsequently disappear was obviously misguided. Furthermore, as in many parts of the world, needle-exchange programs are illegal within Harm Reduction education. Inadequate condom distribution remains a secondary problem. An infrastructure for medical care and sustained distribution of reliable (generic) medications does not currently exist. Many health care providers remain fearful of treating these patients and echo the behaviors seen during the early days (and in some cases today) in our own epidemic.

The global sex and drug trades (including trafficking), political and economic instability, stigma, tyranny, and disproportionate infection of women add further complexity to the pandemic. A cohesive, international solution for this pandemic is vital. In many cultures, women experience discrimination based solely on gender. Hence, their access to earlier diagnosis and appropriate treatment will be and are impaired. As a society continues to marginalize specific subpopulations, its ability to provide a basic safety net is hampered. The advocacy voices that were heard in the US are silent and silenced in many of these countries. Perhaps in our 25-year history with HIV and AIDS, there are potential solutions for humanity. Hence, our new goals must be to maintain our stamina, vigilance, vision, and dedication in order to achieve success.

Susan M. Miller, MD, MPH is currently a Research Associate Professor at the University of Houston and is certified as an HIV specialist through the American Academy of HIV Medicine.
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Author:Miller, Susan M.
Publication:Research Initiative/Treatment Action!
Geographic Code:1USA
Date:Sep 22, 2005
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