In 1981, a handful of Americans were infected with a merciless, fatal disease that attacked their immune systems. They were inexplicably dying of rare cancers and strains of pneumonia that their bodies were unable to fight.
The Human Immunodeficiency Virus (HIV), as the disease was later named, kills the body’s immune system cells, called CD4 cells. Once the number of CD4 cells dips below 200, an HIV patient enters the last stage of his or her disease: Acquired Immune Deficiency Syndrome, or AIDS.
In the 1980s and 1990s, HIV was a death sentence. Little was known about transmission of the virus — doctors knew that HIV was transmitted by body fluids, but were not sure by how much or in what form. Out of ignorance sprang paranoid rumors claiming that HIV could be contracted from a drop of blood or saliva, or even from a toilet seat.
Today, HIV rarely delivers a swift death. Although the life spans of HIV patients vary, their life expectancy is 21 years short of the national average for all Americans, according to a 2009 study by the Centers for Disease Prevention and Control. For an HIV patient who 15 years ago would not have expected to live a decade, it’s almost a miracle. Today, HIV is treatable, although not curable. Simply, there are more HIV patients today because they are living longer — much longer — with the disease.
“They have careers, they have a family and lead normal lives,” said Susan Schweickert-Janty, the HIV nurse coordinator for Peak Vista Community Health Centers in Colorado Springs.
Nearly 30 medications, divided into six classes, are available for the treatment of HIV. Each class of medications targets a specific part of the virus, and prevents it from multiplying or attacking the body. Although HIV patients are living longer, the virus and treatments wear down patients’ body. Many medications cause side effects — diarrhea, fatigue — and over time, some long-term HIV patients develop osteoperosis, kidney disease, or have neurological problems.
Thirty years after the first AIDS diagnosis, there are well over 40 million HIV patients worldwide. As of December, 736 were people living with AIDS or HIV in El Paso County. Last year, 363 HIV/AIDS patients died in El Paso County, according to Ralph Wilmoth, STI and HIV section chief at the Colorado State Department of Health and Environment.
For today’s HIV/AIDS patients, life is a balance of multiple drug regimens, doctors’ appointments and day-to-day existence.
COCKTAILS GIVE NEW LIFE
Until 1996, HIV was a one-way ticket to a rapid and often miserable death. There were few options for treatment — one, a drug called AZT, caused horrific side effects — constant diarrhea, chronic fatigue and severe mouth blistering, among others.
That year, scientists created a new form of treatment with a series of medications known as Protease Inhibitors. This new class of medications became a part of antiretroviral therapy, a treatment system for HIV infection. In antiretroviral therapy, patients take drug cocktails — potent mixtures of multiple new drugs — that treat HIV and various other conditions caused by the disease and the drugs themselves.
The drug cocktails brought patients back from the brink of death. Gary Archuleta, 46, thought he was in the last few months of life as diagnosed by doctors when he started the new medications. Archuleta had begun to dismantle his life — he had divorced his wife, quit his job, and moved home to Colorado Springs — when he realized that he wasn’t going to die, at least not any time soon.
Archuleta, now a motivational speaker for the Southern Colorado AIDS Project, sustains himself on four drug cocktails and heaps of optimism. His greatest mistake, he said, was retiring 18 years ago.
Although life-saving, the medications for HIV patients is a constant reminder of their illness. Even after years of medications, Archuleta said, adjusting to the side effects of new medications is difficult. And there is always the harsh reality that the medications don’t cure, but only treat. “Who wants to take a handful of pills that you know will make you sick, but won’t make you well?’ Archuleta said.
HIV COMPARED TO DIABETES
Schweickert-Janty has been working as a nurse with HIV patients since the early 1990s, and served for 12 years as an HIV nurse coordinator and then as an STD clinician for El Paso County. In 2006, Schweickert-Janty’s position as clinician was terminated, followed by the closing of the county’s HIV and STD programs and specialty clinics in 2010.
Schweickert-Janty now works for Peak Vista Community Health Centers, overseeing the HIV treatment program. Years ago HIV patients would have to see a specialist every three months; now, Schweickert-Janty said, most patients come in every six months.
“When patients are well maintained, they are much easier to manage,” Schweickert-Janty said.
Thirty pills have replaced the heavily toxic AZT. Some, such as Atripla, which combines three medications in one, is taken once daily.
HIV is becoming like other treatable diseases, Schweickert-Janty said. Schweickert-Janty compares HIV to diabetes — both diseases can kill, she said, but these days, both can be maintained. When a patient is first diagnosed, Schweickert-Janty said, she no longer has to prepare patients for a rapid death.
“It is just so easy to tell a patient, after they are diagnosed, that they just have to take one pill and they’re fine,” she said.
Twenty years ago, an HIV positive woman could not give birth to a child without transmitting the disease. Today, with the proper medical treatment, the transmission of HIV from mother to child can be prevented.
“If a woman comes in and is HIV positive and she wants to start a family, that’s not a problem anymore,” Schweickert-Janty said. “We say, ‘OK, you can do that.’”
During the first years of the AIDS epidemic, little was available to patients in the way of help. HIV patients were put on Social Security, Schweickert-Janty said, and left to fend for themselves.
Today, Peak Vista serves about 250 HIV patients, most of whom don’t have insurance, Schweickert-Janty said. These patients are enrolled in the Colorado State AIDS Drug Assistance Program which, as of June 2010, had 1,822 HIV patients receiving their medications through the program.
Peak Vista also relies on the Colorado Indigent Care Program which helps patients pay for other antiretroviral therapy treatments. The money patients receive from the program depends on their income level, Schweickert-Janty said. Those patients who already have Medicaid or Medicare do not qualify for the program.
With the closing of the county’s STD clinic and HIV program, Peak Vista is one of the only options for HIV patients without insurance.
“If we didn’t have this program here at Peak Vista, there would be no support for people without insurance,” Schweickert-Janty said.
The recession as well as a normalization of HIV has caused a scale-back — HIV/AIDS no longer seems as urgent as it was 20 years ago.
But people are still becoming infected with HIV, and a cure has not been found. Experts say 250,000 people in the United States are HIV positive and don’t know it, according to Janty.
“We still can’t figure out how to get people tested,” she said. In order prevent the spread of HIV, Schweickert-Janty said, everyone should be tested for HIV on a routine basis.