By Susan Blumenthal, MD, MPA
It was unusual 30 years ago for a world-famous movie star to fight for a health issue in the halls of the U.S. Congress. Yet Elizabeth Taylor made history on May 8, 1986, when she entered the Dirksen Senate hearing room and took her seat at the long wooden table, center-stage in front of members of the Senate Committee on Appropriations. Though she exuded the elegance, beauty, and confidence of an internationally acclaimed actress, that day she testified in her role as the national chairman of the American Foundation for AIDS Research (now known as amfAR, The Foundation for AIDS Research). She was there to speak out about “a national scandal, a scandal of neglect, indifference, and abandonment.” Elizabeth Taylor was shattering the silence and stigma surrounding AIDS. Today, as we commemorate World AIDS Day, we need more than ever the power of such a voice in the United States and globally. We need a chorus of voices and actions across all sectors of society to fast-track ending the AIDS epidemic that she called for three decades ago.
Only five years after HIV/AIDS emerged in America, Dame Elizabeth quickly became a leading advocate and champion for those affected by this disease, calling for increased research and access to services. Her dear friend Rock Hudson had died of AIDS less than a year earlier, making the battle very real and personal for her. Her testimony in Congress was a major force in ensuring the passage of the monumental Ryan White CARE Act—the largest federally funded program for people living with HIV/AIDS. Her words conveyed a wisdom and knowledge about the fight against HIV/AIDS that remain hauntingly true today: “The infection continues to spread uncontrolled. Some experts estimate that more than 1,000 additional people are now becoming infected with the AIDS virus every single day. AIDS can strike people of all races and all ages, including children, and the unborn. Women as well as men.”
Though research has led to dramatic advances over the past 35 years, the epidemic continues to persist and rapidly spread. Today, a staggering 5,753 people worldwide contract HIV daily—about 240 every hour. More than 36.7 million people are living with HIV globally, and 1.1 million die annually from the disease.
Taylor’s testimony offered hope as well: “An unprecedented health crisis is upon us, one that threatens in one way or another virtually all of our lives. A heroic, round-the-clock fight is being waged by our scientists against AIDS to find methods of prevention and treatment. Truly promising leads have been discovered that offer hope. Future therapies may even make possible a cure for those already afflicted.” She spoke of the urgent need for greater investments in HIV/AIDS research, prevention, and treatment—and she called for a cure for the disease as well.
Thirty years later, we are at a turning point in the eradication of the epidemic and have witnessed the translation of her testimony into progress toward achieving these goals. Success is within our reach with a fast-tracked approach promoted by UNAIDS and other organizations to make AIDS history.
Groundbreaking research has given us a better understanding of how the HIV epidemic emerged. As a result of a new genetic analysis of stored blood samples in the United States, along with some fascinating medical detective work, researchers recently reported in the journal Nature that HIV arrived in the U.S. way before the first case, “Patient Zero,” was reported in the 1980’s. They found that the strain of HIV linked to almost all of the AIDS cases in America was carried from Zaire to Haiti around 1967, spread to New York City around 1971, and then from New York to San Francisco around 1976.
Treatment Advances
Research also produced lifesaving antiretroviral medications (ARVs) that have revolutionized HIV/AIDS treatment and lengthened life expectancy worldwide for those who have access to this therapy. As a result, mother-to-child transmission of HIV in the United States has been virtually eliminated, and a rapidly increasing number of people living with HIV are living longer and healthier lives.
According to a new UNAIDS report, of the 36.7 million people living with HIV worldwide, 18.2 million people are now receiving treatment – a dramatic increase from the less than one million who had access to the lifesaving drugs in 2000. Annual new HIV infections have fallen over 40 percent globally since 2000, and the number of deaths from HIV has declined by nearly 50%, from 2.1 million in 2004 to 1.1 million in 2015/2016. In 2015, 77% of pregnant HIV-positive women had access to medications that prevent mother-to-child HIV transmission, and new infections in children have been reduced by half from 2010.
Progress in peril for key populations
Yet this progress is not being experienced by everyone. Significant disparities persists across countries, regions, and demographic groups. While the number of newly infected people has remained stable in most regions, the annual number of new HIV infections in Eastern Europe and Central Asia increased by 57 percent over the past five years. The UN report also found that more than 40% of all new HIV infections globally and 90% of new HIV infections in Central Asia, Europe, North America, the Middle East, and North Africa in 2014 were among people from key populations and their sexual partners, including gay men and other men who have sex with men, sex workers, transgender people and individuals who inject drugs. These key populations encounter stigma, discrimination, and multiple barriers to treatment and prevention services.
Adolescent girls and young women are especially vulnerable. UNAIDS found that adolescent girls and young women aged 15–24 accounted for 20% of new HIV infections among adults globally in 2015, despite accounting for just 11% of the adult population. In Sub-Saharan Africa, females aged 18- 35 face a triple threat of high rates of HIV infection, low rates of HIV testing and poor adherence to treatment. In 2015, approximately 7,500 young women became newly infected with HIV every week worldwide.
The report underscores the critical need to reach these population groups with targeted treatment and prevention initiatives that meet their specific needs. It takes a life cycle approach underscoring the need to find solutions for everyone at each stage of life.
HIV Prevention Advances
HIV prevention technologies have also advanced dramatically over the past decade and have proven to be cost-effective as well. According to The Institute of Medicine (IOM), every prevented HIV infection saves an estimated $355,000 in medical treatment costs, underscoring the importance of prevention in the long-term response to HIV/AIDS.
At the beginning of the epidemic, preventing the spread of the virus focused on avoiding infection through education, safe-sex practices, syringe exchange programs, as well as ensuring an HIV-free blood supply. However, in recent years, the tools in our prevention toolbox have grown significantly.
According to the World Health Organization, there is compelling evidence that male circumcision reduces the risk of heterosexually acquired HIV infection in men by approximately 60%.
And in 2012, the U.S. Food and Drug Administration approved the use of the combination antiretroviral therapy (ART) tenofovir and emtricitabine as pre-exposure prophylaxis (PrEP). Multiple studies have demonstrated that the intervention can reduce the chance of HIV infection among higher-risk individuals by up to 90%. However, PrEP remains largely inaccessible in most countries worldwide.
Moreover, groundbreaking research has found that early treatment of an HIV-infected partner with ARVs dramatically decreased the risk of transmission to the uninfected partner by 96%. This means that the drugs responsible for saving the lives of millions of HIV-positive people can prevent new infections as well. And some scientists believe that if access to these medications were greatly expanded worldwide, the disease could potentially be eradicated within decades.
Developing an HIV Vaccine
Additionally, scientists are continuing to make progress in the quest to develop a vaccine to prevent HIV. The secret behind HIV‘s treacherous ability to elude the immune cells that police the body for unwanted infections lies partly in the virus’s rapid mutations. While a person may become infected with one HIV strain, that single virus type can rapidly mutate into a million different iterations, effectively making it unrecognizable to disease-fighting immune cells. This ability to quickly mutate has thwarted vaccine efforts thus far. The HIV Vaccine Clinical Trial RV 144 conducted in Thailand, was the first vaccine trial to support proof of concept that a vaccine can protect against HIV transmission, even though it demonstrated only 31% effectiveness in preventing HIV and its effectiveness diminished over time. Building on these results, a large-scale HIV vaccine clinical trial began this week in South Africa conducted by the National Institute of Allergy and Infectious Diseases (NIAID) and its public and private sector partners. According to the NIH, this new study, called HVTN 702, is designed to determine whether the regimen is safe, tolerable and effective at preventing HIV infection among South African male and female adults. Results are expected in late 2020. Many scientists believe that even a 50% effectiveness of the vaccine would make a life-saving difference given that 1 In 7 people in South Africa – 7 million individuals― are infected with HIV.
Discovering a Cure for HIV/AIDS
Today, the discovery of a cure for AIDS is finally on the horizon. A man known as the “Berlin patient” appears to have been cured in 2008 through a bone marrow stem-cell transplant for his leukemia using cells from a donor immune to HIV (about 1% of Caucasians carry this immunity). During the transplant process, the patient’s own HIV-infected white cells were wiped out and the donor’s stem cells took their place. Since that time, the patient has become HIV negative and no longer requires treatment with ART. This unique and fascinating case has provided clues in the roadmap to discovery of a cure and a glimmer of what continued leadership and funding might yield.
For example, scientists are working to cure AIDS by manipulating receptors on white blood cells through gene therapy to mimic the natural immunity of the Berlin patient’s bone marrow stem cell donor. Other scientists are using a cutting-edge gene-editing tool known as CRISPR to identify mutations that make immune cells resistant to HIV. A research team at UCSF hopes to pinpoint genes that are required for HIV to replicate, which may help in the development of new drugs and also contribute to creating cell-based therapy, whereby people with HIV receive cells from those who are resistant to the HIV virus.
amfAR, The Foundation for AIDS Research, has spearheaded multisite research collaborations to develop a cure for AIDS, established the amfAR Institute for HIV Cure Research at the University of California-San Francisco, and supports many other innovative new cure-focused studies. In addition, the NIH has provided funding to foster scientific research and public-private partnerships toward this goal. These and other initiatives, coupled with the availability of new and emerging technologies over the past several years, have brought the scientific community a new understanding of the challenges that must be overcome to obtain a cure. They have also provided a research roadmap and have engendered hope that with the necessary investments, a cure can be discovered in the near future.
Progress or Peril?
Rapidly accelerating progress in recent years suggests that we can end AIDS and underscores the urgent need for increased investments in treatment, prevention and cure strategies. The U.S. President’s Emergency Plan for AIDS Relief, or PEPFAR, has provided $65 billion in funding since it was established in 2003, and the Global Fund to Fight AIDS, TB and Malaria has provided billions more since its founding; these programs and others have saved millions of lives. 18.2 million people including 910,000 children are now on antiretroviral therapy, double the number from five years ago. Life expectancy has increased dramatically. In 2015, there were more than 5.8 million people living with HIV who were over the age of 50. If treatment targets are met, this number should increase to 8.5 million by 2020. However, with these life expectancy gains comes a five times greater risk of chronic disease, so the issue of aging with HIV, including the long-term side effects of ART and drug resistance must be addressed. Additionally, progress has stalled on HIV prevention among adults. Globally, new infections in young women aged 15-24 have declined by just 6% between 2010 and 2015, while the rate of new HIV infections among 25-49 year old men and women have been essentially stable without any significant reductions. Additionally, new HIV infections appear to be on the rise among MSM and people who inject drugs worldwide.
In addition, alarmingly, in recent years, global spending on AIDS has flat-lined. UNAIDS projects that $21.7 billion will be spent this year, but that number must grow to $26.2 billion annually by 2020 to continue fast tracking the response to this disease. According to the organization, failure to fast-track would translate into an additional 17.6 million HIV infections worldwide and more than 10.8 million AIDS-related deaths globally between 2016 and 2030. With recent political changes in America and around the world, after decades of fighting AIDS, policymakers and donors must not lose sight of the urgent need to continue doing more. Ending AIDS means reaching a tipping point when the number of people who receive treatment exceeds the number of new infections. And we’re getting close, specifically in sub-Saharan Africa. Approximately 1.9 million people were placed on antiretroviral treatments in 2014 and there were 2.1 million new cases. If new cases keep falling and more people receive treatment, coupled with progress towards a cure and a vaccine, the end of AIDS is a real possibility.
The Way Forward
The bottom line: in just the last decade, research has shown that combining proven public health approaches (e.g., education, safe-sex practices including condom use, syringe exchange programs and ensuring the safety of the blood supply) with new breakthrough prevention strategies, including pre-exposure prophylaxis with ARVs, male circumcision, and early treatment-as-prevention to reduce HIV transmission, is no longer just a goal but a reality. The scope of treatment and prevention options today has never been greater. The knowledge and experience is there to reach people in the communities where they live and at every stage of the life cycle. However, sustained success cannot be achieved without a policy environment that permits delivery of effective services to all those in need.
If there is to be a world without AIDS, then communities and countries must work together to strengthen efforts and commit the resources that are needed to achieve this goal. Innovative initiatives like PEPFAR, the Global Fund to Fight AIDS, Tuberculosis, and Malaria, the US National AIDS Strategy, and amfAR’s Institute for HIV Cure Research, are integral in achieving progress against HIV/AIDS. These high-impact initiatives must be fully supported, strategically deployed, and effectively aligned and coordinated. Global investments in research are the foundation of these efforts, paying lifesaving dividends. Landmark new findings must be put into practice now. Science must also be expanded in the years ahead to discover effective, lower-cost, innovative approaches to treatment, testing, and prevention. Ultimately, an HIV vaccine and a cure are needed to end HIV/AIDS globally. Additionally, the drivers of the epidemic—poverty, lack of education, stigma, gender inequities, violence, and discrimination―must be appropriately addressed and eliminated. As Dame Elizabeth Taylor testified 30 years ago, “It is my hope that history will show that the American people and our leaders met the challenge of AIDS rationally and with all the resources at their disposal, for our sake and that of all humanity.” Failure to do so is not an option.
Rear Admiral Susan Blumenthal, M.D., M.P.A. (ret.) is the Senior Policy and Medical Advisor at amfAR, The Foundation for AIDS Research and Public Health Editor of the Huffington Post. She is also a Clinical Professor at Tufts and Georgetown Schools of Medicine. Admiral Blumenthal served for more than 20 years in senior health leadership positions in the Federal government in the Administrations of four U.S. Presidents including as Assistant Surgeon General of the United States, the first Deputy Assistant Secretary of Women’s Health, and as Senior Global Health Advisor in the U.S. Department of Health and Human Services. She also served as a White House Advisor on health. She convened the first NIH conference on Women and AIDS and established and chaired an HHS Women and AIDS Task Force with membership of more than 60 organizations. Prior to these positions, Dr. Blumenthal was Chief of the Behavioral Medicine and Basic Prevention Research Branch and Chair of the Health and Behavior Coordinating Committee at the National Institutes of Health (NIH). She has chaired numerous national and global commissions and conferences and is the author of many scientific publications. Admiral Blumenthal has received numerous awards including honorary doctorates and has been decorated with the highest medals of the U.S. Public Health Service for her pioneering leadership and significant contributions to advancing health in the United States and worldwide. Named by the New York Times, the National Library of Medicine and the Medical Herald as one of the most influential women in medicine, Dr. Blumenthal was named the 2009 Health Leader of the Year by the Commissioned Officers Association and as a Rock Star of Science by the Geoffrey Beene Foundation. She is the recipient of the Rosalind Franklin Centennial Life in Discovery Award. Her work has included a focus on HIV/AIDS since the beginning of the epidemic in the United States in the early 1980’s.