Dawn Averitt Bridge, founder of The Well Project – a national advocacy and support organization geared toward HIV-positive women – has been living with HIV/AIDS since 1988.
Over the past two decades, she has seen firsthand the evolution of treatment, awareness, and understanding of the disease, and has learned that moving forward requires a delicate balance of optimism and realism.
“You have to balance the hope with the hype,” she said. “But I still believe it is possible to live in a world without AIDS.”
In terms of global health, HIV/AIDS is still relatively new on the scene; 1981 is commonly referenced as the ‘beginning’ – marking the year that general awareness of the virus and the disease began to spread in the U.S. and other countries.
25 years later, AIDS has claimed more than 22 million lives worldwide. One million people are currently living with HIV in the U.S. alone, and an additional 40,000 infections are expected to occur before year’s end, according to the Centers for Disease Control (CDC).
On the occasion of this somber anniversary, health care professionals across the country are reflecting on the progress that has been made in understanding and treating the virus and the disease, but also mindful that a long road remains ahead, one with many potential twists and turns.
A New Hope
Averitt Bridge was one of several participants in a recent multi-media project titled DecAIDS, which culled expertise from HIV/AIDS professionals nationwide to gain insight into where research into the disease has been, and where it’s going.
The pervasive theme heard among U.S. health care professionals is that many challenges have already been surmounted in the management of HIV and AIDS in a relatively short period of time, and researchers across the globe continue to clear hurdles.
Robert Schooley, MD, head of the division of infectious diseases at the University of California San Diego, said the past 10 years have seen a flood of new drugs, better drugs, and more effective drug therapies that have had a profound effect on both survival rates and quality of life for those living with AIDS, and in the coming years, he expects more of the same.
“The trend in the next 10 years will be toward better drugs that hit more targets and drugs that are used in better ways,” he said. “That’s good news; we will have more and more options for our patients.”
With those options, though, come new challenges, including new treatment and research goals, as well as the continuing struggle to understand how the HIV virus works and how the body can be helped in fighting it.
A Fast Moving History
Consider the starting point: for years after it first emerged, neither the virus nor the disease even had a proper name. The virus was referred to as both LAV and HTLV-3 at one point, the acronyms given by two different research groups in France and the U.S.
Additionally, professionals coined their own acronyms for the new immune system disorder just to put a name on it at all; in the early 1980s AIDS was called everything from GRID – Gay Related Immune Deficiency – to KSOI, an acronym already given to the CDC’s Kaposi’s Sarcoma and Opportunistic Infections task force that was formed to investigate new occurrences of rare diseases in previously healthy individuals.
Once AIDS had been identified and the HIV virus isolated as its cause, though, a better understanding of the disease and its transmission followed – the belief that AIDS was ‘the gay cancer’ was corrected, safeties were put into place to protect blood supplies, and on HIV test was developed and patented.
In 1986, the first drug found to slow the attack of AIDS on the body, AZT, which was developed as a cancer drug in 1964, was put into use, and remained the primary drug used to treat the disease for 10 years. During that time, AIDS became a major focus of several public health organizations around the globe, including the World Health Organization (WHO), and awareness increased incrementally.
By 1997, the first of a new class of drugs had been introduced and combination therapy (the drug cocktail) emerged; the advancement led to dramatic improvements in the management of HIV/AIDS, as well as significant new findings in reducing the transmission of HIV from mother to child.
Still, at the 20-year mark in 2001, AIDS was deemed the fourth-largest killer worldwide by the WHO, and in 2005, 5 million new infections were reported.
Daniel Skiest, MD, director of HIV services for Baystate Health, said HIV/AIDS must now be viewed through two lenses; one centered on the progress made through research, especially in the U.S., and another on the overall global picture, in which the AIDS epidemic remains a major public health emergency.
“We’ve made vast progress domestically,” said Skiest. “We’ve developed some very effective drugs, and are now able to manage the disease as a chronic illness, not a terminal one. But numbers are not going down. Younger people are being infected and there is an up-trend in women, especially women of color.
“We’re also seeing new hot spots emerging across the globe, such as in India and China – countries with large populations,” he added. “We still have a long way to go in terms of prevention.”
Skiest said social and cultural issues are still very pressing, globally as well as locally. Some cultures have a distrust of accepted HIV/AIDS treatments, for instance, while in others, silence regarding the dangers of the HIV virus remains pervasive. In addition, poor communities lack the resources to promote prevention and secure effective treatments to manage HIV/AIDS among those already infected.
And even in areas where new, effective drug treatments are available, another trend is emerging among younger people who do not remember the early, more fearful years of the disease.
“Condoms have a significant impact on HIV transmission rates, and we have developed microbicides that also have an effect. But people need to use them,” said Skiest. “Our concern today is that younger people are not seeing HIV and AIDS as a big deal, because the meds have improved so greatly. But that is not the message we want out there; meds are not 100% effective, and they’re very expensive.”
Robert Hoffman, MD, an infectious disease specialist with Mercy Medical Center, elaborated on the dichotomy created as advances surge forward in the field of HIV/AIDS research.
“The folks who are in the system – those who have forged connections – do very well,” he said. “We have great drugs, and we have effective treatment modalities that lead to excellent outcomes.
“Those people who are not in the system, those who do not trust that it works, or who are poor, or illicit drug users, for instance, they do terribly,” he countered.
New Drugs, New Concerns
But even when a patient is ‘in the system’ and on a drug regimen to control HIV, Hoffman said there are challenges to face following the advent of new, potent drugs, among them the development of more resistant strains and of patient adherence – in simpler terms, getting patients to take their meds regularly.
Even with increasingly effective drugs and drug combinations that are easier for patients to take than they were 10 years ago, the HIV virus remains a complicated one that can become resistant to treatment very easily. Sticking to a strict drug regimen is key to combating the virus, more so than any other disorder.
Taking meds erratically can lead to more-resistant strains of the virus multiplying in the body, which are consequently harder to treat and, if passed to someone else, will maintain the same resistant traits.
“It’s absolutely the worst thing you can do,” Hoffman explained. “Everything you hear about ‘superbugs’ and how they work is true 10-fold with HIV. The virus mutates very, very easily, and as it does, it can easily evade the effects of certain drugs. That’s the reason why, historically, we’ve treated it with multiple drugs at once.
“When people start and stop their meds, only the easiest cells to kill off are attacked, leaving mutated cells to survive and multiply,” he continued. “That creates viruses that are more difficult to treat and newly infected people will show the same resistance as people who have been living with HIV for years.”
Resistance is a persistent problem in the treatment of HIV and AIDS in all patients, he explained, not just those who fail to take medications regularly. As people live longer with the virus, many medications lose effectiveness, necessitating constant monitoring of drug combinations.
And in addition, patients who have been on a combination therapy regimen for some time often exhibit side effects that differ from those seen in the earlier years of HIV/AIDS treatment, and are still being examined by the health care community – side effects like lipodystrophy, which spurs fat abnormalities including the drastic loss, gain, and redistribution of fat on the body.
Averitt Bridge said visible effects brought on by drug therapies are a new reminder that HIV and AIDS while now regarded as chronic disorders, are still health care issues of great magnitude.
“We can pick each other out,” she said. “We have marathoner’s legs without ever having taken the first jog, or pregnant-looking bellies. This is the new look of AIDS; we’re grateful for the treatments, but there are a lot of trade-offs. To the general public, HIV is manageable. But to the patients, it’s still scary.”
Health Care Delivery vs. Discovery
Hoffman agreed, saying that even with the advent of new, effective treatments and promising discoveries, HIV still behaves differently in every patient and that underscores the fact that there is still much that is unknown.
“It necessitates very close attention to each patient and each patient’s regimen,” he said. “Different people have different genetic make-ups, and some help or hinder HIV. That’s what is currently moving research along.”
And as knowledge of the virus broadens, targeted therapy is also becoming more prevalent, not unlike the therapies used to treat various cancers. Coupled with that individualized approach is another trend toward the creation of drugs that use the multi-tiered approach to combating HIV, but without the need for multiple doses each day.
“The single biggest pharmacological revolution we’ve seen in the treatment of HIV and AIDS has been the move toward one-pill-a-day-treatment,” said Hoffman. “These drugs are very potent, and have minimal side effects. One-pill-a-day treatments aren’t for everyone, but many people are taking just a few medications now, and more still are taking no more than five pills a day.”
The move away from multiple medications has been heralded as a major breakthrough in HIV/AIDS care, however the problem of access remains a large one in some countries. To address global AIDS, experts say prevention is still a primary focus, however there are strides being made in the search for a vaccine, now viewed as the brass ring of health care research.
“We haven’t yet solved the mystery of an HIV/AIDS vaccine,” said Hoffman, although he noted that there are some front-runners in the development stage.
Part of the problem is, again, the rate at which the HIV virus can mutate. A vaccine that is effective today could be essentially worthless next year.
“Another part of the mystery is how the human body reacts to HIV,” he continued. “The body makes antibodies that attack the virus – that’s actually what we’re testing for with an HIV test. But early on in the course of the virus, people lose the ability to control it. We’re looking very closely now at what is lost at that point, and what we can do to create it again.”
Hoffman said any vaccine that shows any kind of promise will be as complicated as the virus itself, and it will be unlikely that it will resemble anything else. He did note that while a vaccine could be introduced within the next decade, he stressed that the short-term focus is on HIV/AIDS management. A cure is still a ‘someday’ proposition, he said, although it remains a great source of hope for many, bolstered by the dramatic advances made in HIV/AIDS research in a short period of time.
“It’s astonishing how fast the science has progressed,” Hoffman said. “I doubt any disease has prompted such effective treatments; we knew so little about the immune system 25 years ago, and now, we know so much.
“But the most important thing for people to understand is that they can live well with HIV, but only if they are tested, found positive, and treated as soon as possible,” he added. “No one needs to die from this.”
Onward and Upward
Averitt Bridge echoed Hoffman’s sentiment, saying that the global community needs to mobilize now not only to curb infection rates, but to spark a drop in those rates and eventually, the elimination of HIV/AIDS altogether.
“We’ve moved mountains in the past,” she said, “but now the mountains are getting bigger. We can’t burn out, we can’t get tired … we can only move forward.”
Jaclyn Stevenson can be reached at email@example.com