Willnette Cunningham, 69, a retired postal worker in Richmond, Virginia, is enjoying life as a mother of two adult kids, grandmother of five and great-grandmother of three.
(Getty Images)
When Cunningham's health deteriorated more than two decades ago – as she went from being HIV-positive to having full-blown AIDS – she never envisioned she'd be doing as well as she is today, despite other medical challenges along the way.
Not too long ago, AIDS seemed insurmountable. When it began making its impact in the U.S. around the early 1980s, no one knew how to contain HIV or prevent the body-ravaging and ultimately lethal infections associated with AIDS.
That was then – this is now. Although still formidable, an AIDS diagnosis today doesn't hold the power it once did.
"When the term AIDS was originally developed, it was a one-way ticket," says Dr. Daniel Nixon, an associate professor at the Virginia Commonwealth University School of Medicine and medical director of the VCU Infectious Disease Clinic. "Now its meaning is different because it doesn't reflect permanency. It reflects the fact that we can recover (patients') immune systems. The importance of the term has diminished quite a bit."
With ongoing advances in the field of HIV/AIDS, expectations and quality of life keep improving for people with these diagnoses. Here are some keys reasons for optimism when it comes to living with HIV/AIDS today:
In 1987, the Food and Drug Administration approved the drug AZT (azidothymidine) to delay the development of AIDS in people infected with HIV. Ever since, waves of drug development have produced new classes of increasingly effective medications with fewer side effects.
"It really wasn't until the mid-90s where we had effective-enough treatment that we could say: We can control your virus and attempt to keep you healthy," says Dr. Jay Kostman, medical director of the John Bell Health Center, part of Philadelphia FIGHT Community Health Centers.
By then, drugs called protease inhibitors could be used in combination with other drug classes to attack the AIDS virus through different pathways. These combinations, called highly active antiretroviral therapy or HAART, were often referred to as "AIDS cocktails."
"We also had the ability at that time to measure the amount of virus in the blood," Kostman says. "So we could tell that the medicines were doing what we wanted them to do, which was to decrease the amount of virus."
However, it was hard for people to stick with complicated drug regimens. Most included roughly 10 to 20 pills, staggered throughout the day. "It became a full-time job to take your medicines at that point," Kostman says.
It was a breakthrough when the first single-tablet daily regimen came out a couple years later with the drug Atripla, which combined three strong drugs. However, side effects like vivid nightmares prompted some people to stop taking their medicine.
Now, however, a variety of single-tablet regimens are available, and fortunately, newer drugs are easier to tolerate. Accumulating data shows "they continue to be successful as long as people take them," Kostman says.
If a patient's viral load is too low to measure, that's a key sign of success. When people reach this point of undetectable virus, "it's a big accomplishment," Nixon says. "A lot of patients take pride in that. And they're very happy to hear they're staying undetectable."
If you get HIV to that undetectable point, Nixon says, it can't replicate itself in the body. Therefore, he says, the virus cannot mutate in order to develop drug resistance. The immune system recovers and maintains its ability to fight off opportunistic infections. "I like to tell patients, 'You were at risk for these infections but you are no longer.'"
Not only that – once someone's load is undetectable, they don't transmit the virus to other people, Nixon says. Keeping viral loads down is "one of the best methods we have" for controlling the epidemic, he adds.
"The World Health Organization goal is to get 90% of people with HIV into care, get 90% of those on meds and have 90% of those undetectable," Nixon says. "That's what we're all shooting for."
Cunningham was initially diagnosed with HIV in the fall of 1991. "I knew I probably had it," she says. "That's why I went to the doctor. But even though I thought I was prepared to hear it – I wasn't. It was still a shock."
By taking medication including AZT, Cunningham kept her viral load down. She could just manage the monthly $300 out of pocket to afford her prescription drugs.
Unfortunately, in late 1997, Cunningham's fiance passed away and she found herself overwhelmed. "That left me trying to take care of all the bills and everything by myself," she says. "I couldn't afford the medicine once a month and food. So I decided I would skip the medicine and get the food."
In early 1998, Cunningham thought she had come down with the flu. She tried to nurse herself at home. "I was feeling weaker and weaker," she says. "I couldn't get up to fix something to eat, and I had lost weight really bad." When she fell on the way from walking back to her bed from the bathroom, her daughter insisted on taking her to the hospital.
The difference between being HIV-positive and actually being diagnosed with AIDS comes down to whether patients have ever experienced the consequences of a weakened immune system.
"AIDS is really defined by complications of the infection," Kostman explains. "Certain complications, certain pneumonias and certain brain infections are associated with very severe immune suppression."
As HIV levels in the body increase, measures of a healthy, functioning immune system go down. For instance, the body's CD4 T cells, usually simply called CD4 cells, are infection-fighting white blood cells. A low CD4 count provides a threshold for AIDS diagnosis.
"If that count is below 200, or you've had one of those clinical complications, you're said to have AIDS," Kostman says. "And once that happens you're always defined as having AIDS, even if your T-cell count goes up to 1,000 and you've had no infections for years."
Although Cunningham and her daughter arrived at the emergency room around mid-afternoon, she wasn't admitted to the hospital until hours later. "Back in those days, you only had a doctor who came on at midnight for HIV emergencies," she says. While they waited, the ER staff performed tests. The eventual finding: Cunningham had developed pneumocystis pneumonia, a fungal type of pneumonia that is a notorious AIDS complication.
Once the HIV specialist examined Cunningham, he was appalled by her condition. "When he got on shift, he came to me and said, 'I have one question,'" she recalls. "'Your heart rate is off the chart. All your other organs are off the chart. I'm just trying to figure out how you're still alive.'" Then, as now, Cunningham credited survival to her strong religious faith.
During Cunningham's two-week hospitalization, she saw one specialist after another. She couldn't keep food down; couldn't even stand the smell. For a time, she relied on liquid nutritional supplements until her appetite slowly returned.
As Cunningham slowly recovered from her health crisis, she worried about the future. "I had two children who had just become young adults," she says. "You're thinking: What's going to happen to my kids if something happens to me?" She brought her family – her kids and her brother – together for a frank discussion. Her brother told her about a co-worker who had been managing AIDS for years and said, "You can live with this disease." Those words of encouragement were the beginning of hope, she says.
Cunningham connected with a specialist who offered similar encouragement and support. She still remains in this doctor's care. She was put back on HIV medication during the hospitalization and has stayed on it ever since. "I became undetectable again in 1999," she says. "I'm still undetectable."
Living with any chronic condition and doing as well as possible means being an aware, engaged patient. That includes advocating for yourself and working closely with your health care team. And it means following your team's recommendations, such as:
Medical recommendations sound similar whether you have hypertension or HIV/AIDS. With the latter, you're probably more likely to also receive standard counseling on safe sexual practices, like using condoms, to prevent sexually transmitted infections.
People deal with HIV/AIDS at different points in their lives, with different health considerations. For instance, women of childbearing age have unique issues.
Women with HIV can have a safe pregnancy with monitoring. "What you're really trying to do is prevent transmission to the baby," Kostman says. "The best way to do that is to make sure the woman is on effective medication and has her virus undetectable – and particularly, undetectable at the time of delivery, although that's not the only time the virus can be transmitted."
Someone who does not have HIV but is at higher risk of being infected with the virus can choose to use pre-exposure prophylaxis, or PrEP. In 2012, the Food and Drug Administration first approved the daily pill Truvada for adults to use for PrEP to block HIV infection. In May 2018, the FDA expanded this approval to include adolescents.
"If there's a discordant relationship where one partner is positive and the other is negative, that's definitely an example of where PrEP could be administered," Kostman says. "Even if the person who's infected is undetectable and less likely to transmit, PrEP is still an option for the uninfected partner."
As with other chronic conditions, such as high blood pressure or diabetes, people diagnosed with HIV/AIDS face higher risks of complications. A small but measurable increase in cardiovascular disease, COPD/emphysema, osteoporosis and cognitive conditions like dementia exists for people with HIV, Nixon notes. Comprehensive health care for people with HIV takes conditions like these into account.
Having the diagnosis in itself can be stressful. And stigma, while it has eased over decades, still affects some people with HIV/AIDS. Psychosocial support like counseling is a crucial service that people can access during their clinic visits.
Practical assistance, such as connecting people with their state's benefit programs, helps make HIV medication and health care affordable for everyone.
So far, there isn't a cure for AIDS. People can and do live stable lives with HIV, but recovery isn't yet possible. A few cases have been documented of HIV-positive people who received aggressive treatment for cancer, like a bone marrow transplant from a select type of donor, and no longer show any evidence of HIV infection.
For now, prevention and treatment remain the key focus, including the need to get the message out in pocket areas of increased HIV transmission, Kostman emphasizes.
Real hope is on the horizon. "The fact that there are studies going on looking for different strategies for cure is really exciting," Kostman says. "We couldn't use the word 'cure' 10 to 12 years ago."
Vaccine studies are ongoing, but there isn't an HIV vaccine yet. However, Kostman says, "The fact that we have a pill people can take that will prevent them from getting infected is also very exciting."