In 1985 HIV was still called HTLV III and a new blood test was approved to test people with risk factors. You were considered at risk back then if you were a gay male (especially if you were Black or Hispanic or your partners were), if you shared needles for illicit intravenous drug use, if you had a blood transfusion, were a recent immigrant from Haiti, or were born to a mom who had AIDS. There was no medicine to treat this emerging infection and no way to tell how, or if, you were going to get sick. People were scared because they did not understand how the virus was passed from person to person, causing widespread stigmatization.
I like to think that those of us who entered this fight back then were a little like pioneers; not quite sure where the journey would lead us, understood there could be some perils along the way, but knew there was something better just beyond the next horizon. Many of us were personally invested, having had friends who were sick or had died from AIDS. Being in the fight made us feel less helpless, when the only other choice was to passively watch our friends die far too young.
In the years that followed, the word AIDS was replaced with HIV as people began living longer. Testing for HIV antibodies became the foundation of tests, not the end. Medications were slowly FDA approved, but created another fight, for tolerability, availability and affordability. After stories of solid hard-working people being fired from their jobs began to emerge, the government acted and HIV discrimination in the workplace became protected under the Americans with Disabilities Act. Amendments were passed that made it easier for people living with HIV to meet the definition of disability. HIV infection was no longer just limited to gay men or needle sharing drug users, as women, children and heterosexual males became linked to the epidemic. Minorities, however, continued to be over represented in the epidemic, and slowly HIV infection became more associated with what you did, rather than who you were. It appeared as if our educational efforts were paying off, as most people learned how to protect themselves.
The first wave of people with HIV was largely made up of educated gay men; many who had strong ties to the gay community. Gay and straight friends stepped in to help. Those friends made a lasting impression on me. They would work their full-time job, take a turn caring for a sick friend (with a shift that could last from several hours to all night long), then go back to their jobs the next day and start all over again. Friends brought food, wiped faces, held hands, and listened. They brought the gift of comfort and made sure no one died alone. They were true heroes.
Living with HIV is vastly different today. More people live with HIV than die from it. More people live quality lives as well as quantity. Many people either return to the workforce or never have to leave it, pursuing careers and living independently. Medications are tolerated fairly well by the majority. Medications have been affordable and accessible through private and public insurances, copay assistance from the drug companies, and by state programs using Ryan White funding.
However, even with all these advances, stigma continues to be an enemy as does the increasing opioid epidemic. The newest generation of gay males has not benefited from the experience of those who lived through those early years or the educational efforts of Public Health. Social media hook up sites give the illusion that an online profile means you know everything there is to know about another person, including their HIV status. The Millennial generation may not be the rebels like those of the previous generations, but their mindset of needing to learn through a variety of life experiences makes their calculated risk taking seem worthwhile no matter the consequences. The old education messages are not only ineffective to this generation but the method is as well. Social media is the preferred means of communication and doing it in real time is paramount.
As I leave direct patient care and my career of 30 plus years behind, I worry that those of us who have been doing this for many years have grown complacent and may not be up to the challenges that lie ahead. I told several patients in the last few years that they were living the dream. The dream of those in that first decade, who hoped medications would be discovered that not only extended life but gave back some quality. With this dream came the hope that they could go to school, stay at their jobs, marry or have happy long-term relationships, and have healthy children if they wanted. It felt like the hard work was behind us and it would only get better.
The reality is that though the challenges may be different now, until there is a cure, the fight is not over. There is still much work to be done, and new skills are needed to keep fighting. People are needed who can use social media to reach those at risk. Political voices are needed to make sure the medications we have continue to be affordable to all. Religious and spiritual leaders need to step up and make sure that all men and women are seen as worthy of respect and compassion, and are not judged according to outdated beliefs about race, gender, or sexual identity. It is imperative that we study every aspect of how people perceive pain and deal with life’s challenges. Without this knowledge, it will be impossible to defeat the opioid epidemic, which continues to greatly impact the HIV fight.
I challenge you to do what you can to make a difference. Showcase your skills and get involved. Life is busy but if everyone did just a little, the momentum would propel us to form solutions to current issues. I promise you, your efforts will bring you great satisfaction. One day people will say, “I used to have HIV”, and you will be proud to say that you played a role in history.
– Lynne Weihrauch
