By Christine Wenc ~
The National Library of Medicine began a new web archiving effort in September 2016 to identify and collect web content on the topic of HIV/AIDS. Special HIV/AIDS funds supported the work of a historian, Christine Wenc, and History Associates archivist Erin Mashni to select web content to crawl, describe the selected items, and review the collected content for quality assurance. On this World AIDS Day 2017, NLM is sharing this collection with the public, making available an initial set of websites and social media archived to document HIV/AIDS in the early 21st century. More content will be added over time.
In the past year, as curator for the National Library of Medicine’s HIV/AIDS web archive collection, I have led selection of what I hope is a representative snapshot of the current social, cultural, and biomedical world around HIV/AIDS—at least, as it is represented on the Internet—so that future researchers can use this collection as a primary source to understand HIV/AIDS in the early 21st century. We have selected several hundred websites to be crawled (that is, collected) and archived on a regular basis. My selection was informed by the priorities of the social and cultural history of medicine: how disease and society interact; how disease is defined, experienced, and understood by healthcare providers and scientists as well as laypeople; and how this changes over time.
Highlights of the collection include the organizational response to HIV/AIDS, including pages of state public health departments in the United States, which often post current HIV surveillance and epidemiological data. Federal sites in the collection include HIV-related pages at the Department of Health and Human Services, such as NIH, and the Centers for Disease Control and Prevention (CDC), and the Veteran’s Administration, as well as the PEPFAR site (the President’s Emergency Plan for AIDS Relief, started by George W. Bush, which provides funding for HIV treatment in resource-limited settings around the world). I selected sites of organizations working on preventing HIV infection in women, clinical trial networks, vaccine research networks, faith-based organizations with HIV-related missions abroad, and many others, as well as materials related to the current opioid epidemic and its role in potentially accelerating HIV infection rates in the United States. I also include sites for organizations devoted to addressing race and other disparities in HIV infection and medical care: African-Americans are affected by HIV more than any other racial/ethnic group in the United States.
The collection also includes websites for local and regional nonprofit HIV/AIDS service organizations across the country. Many of these organizations originated in the 1980s-1990s AIDS activist era, when groups like ACT UP demanded better clinical care for opportunistic infections caused by their impaired immune systems, faster progress toward effective drugs against the HIV virus itself, and freedom from stigma and discrimination due to HIV status. The work of ACT UP and others finally convinced the National Institutes of Health (NIH) and the Food and Drug Administration to change drug development and approval processes and had a huge impact on the patient rights movement. Today, it seems typical for groups of people coping with unusual or difficult-to-treat health conditions to form organizations advocating for better treatment, both for the disease and as human beings This is the legacy of AIDS epidemic activists, who learned in turn from the earlier 1970s women’s health movement, the disability-rights movement, and the 1950s-1960s civil rights movement. Even now, it is startling to realize how rapidly the HIV virus was identified and effective antiretroviral therapy (ART) became available. Today, people with HIV infection can expect to live a more-or-less normal lifespan as long as they continue their daily drug regimen. And because it reduces viral load so dramatically, ART is also very effective at preventing HIV transmission.
I also selected many sites dedicated to clinical care, living with HIV, and preventing HIV infection—some aimed at healthcare professionals but most for the public. The collection also includes a wide array of social media like blogs, podcasts, personal YouTube videos (“vlogs”) about living with HIV, Twitter feeds, and Facebook pages.
Then we have professional public education campaigns aimed at young people, pharmaceutical company informational sites, and sites addressing the new reality of aging with HIV: with the success of ART, today in the U.S. more than half of HIV-positive people are over the age of 50. I also found a slew of old AIDS news and public service announcements from 1980s and 1990s TV broadcasts uploaded to YouTube. We have also crawled the incredible historic resources saved by ACT UP on the actupny.org website.
Most of the collection so far focuses on the United States, but there are some international resources, such as international clinical trials groups, informational sites from the United Kingdom, the United Nations’ HIV/AIDS pages, and a few blogs from outside the U.S. Since this is the Internet, to be adequately representative of all the astonishing breadth and detail out there I also chose a few conspiracy-minded “denialist” sites asserting that HIV does not cause AIDS.
Calling this collection a “snapshot” of HIV/AIDS in the early 21st century is, of course, not exactly accurate. Website archiving is more like dipping a teaspoon into a blasting fire hose. The Internet changes on a moment-to-moment basis, and the idea that “once it goes online, it’s there forever” is actually not true; content can disappear or change completely without notice. New blogs and websites are being created right now that are not on our list. Some of the selections I made a few months ago have already disappeared, and in coming months and years more will undoubtedly vanish forever, except for what is archived by collecting projects such as this one. A website archive is thus always a work in progress—never complete, and not perfect either. We have undoubtedly missed some fantastic material. And, as not everyone has ready access to the Internet, this collection does not pretend to represent every possible point of view or HIV-related experience. Still, I hope this wide array of materials can provide historians, healthcare providers, and biomedical researchers with significant historical data for their present and future work.
While working on this project, I often thought of the determined spirit and incredible creativity of the original 1980s AIDS activists, many of whom died in that epidemic—as well as the scientific researchers and healthcare providers who responded to their urgent calls for help and devoted their life’s work to finding a way through that crisis. That dedication continues among new generations today. Many of the people whose work is represented here are committed to remedying unfair discrepancies in both access to medical care and in biomedical research priorities, as well as to finding even better HIV treatments and preventive measures. Though ART has allowed HIV infection to be treated as a chronic condition like diabetes in the United States and other wealthy countries, millions of people elsewhere with HIV do not have consistent access to ART or effective clinical care: worldwide, a million people died of HIV-related illnesses in 2016.
Effective treatment with ART depends on adequate program funding, access to health insurance, and social support. Losing ART means not only developing AIDS but foregoing all the preventive benefits of ART. Many also continue to live in shame and stigmatization due to their HIV status, both in the United States and around the world—a shame which is not warranted or deserved. I hope that this collection may inspire researchers of all stripes to learn from the successes and failures of both past and present, and ultimately develop an effective vaccine and an inexpensive, easy-to-administer cure that is available to all.
Web archiving at NLM is carried out by the NLM Web Collecting and Archiving Working Group, in support of the Library’s mission to collect, preserve, and make available to the public materials that provide information in medicine and public health, and document their histories. NLM collects web content documenting Global Health Events, like the 2014 Ebola Outbreak and the Zika Virus, Health and Medicine Blogs, NLM’s own institutional web content, and more. In August 2017, the Library began a new effort to collect around the current opioid epidemic. NLM’s web archive collections are available at https://archive-it.org/organizations/350.