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Reflections on the HIV Epidemic: One Nurse’s 30 Year View

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

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Hello there!

Welcome to NHHPG blog page.

This blog page was set up to be a forum for people to communicate about HIV-related issues. The Advisory Committee of the HPG has developed a protocol for posting to the blog.

Blog Protocol

Who can submit?

Anyone can submit to the HPG Blog.

What can be submitted?

Written pieces that discuss issues that are appropriate and relevant to the HPG mission in New Hampshire, such as, but not limited to, living with HIV/AIDS, HIV medical treatment, HIV prevention, HIV disease, HIV resources/services in New Hampshire for those living with or at risk for HIV/AIDS, HIV news and current events.

How can I submit a piece?

Copy and paste the text of your piece into the section provided on the HPG website. Be sure to fill in all the required contact information and indicate whether you wish your name to appear with the submission or not. If you do not complete contact information and indicate the level of confidentiality you prefer, the piece will not be considered for publication.

What happens when I submit an article to the blog?

The piece will then be reviewed for publication online based on the following criterion:

Confidentiality – there must be no information in the piece that discloses private information and can lead to the identification of a person or persons to whom the information refers.

Citations – All data and statistics must be appropriately noted with the sources from which the information was taken.

Language and Content – The article must use appropriate language to convey the overall message/theme of the piece and must discuss an issue that is related to HIV/AIDS. Written pieces must not use the blog to advertise products or services.

Pieces must be no more than 800 words.

You will be notified via email when/if your blog submission has been accepted for publication. If your submission is not accepted, you will be notified of the reason(s) it was not accepted and you will have the opportunity to resubmit a revised piece at any time. Please be aware that we may not be able to publish every article submitted due to staffing, time and space limitations, but all articles will be considered for publication.

You can submit as many articles as you wish for publication. The denial of one piece does not mean you cannot submit a revised piece and/or a new piece.

Complaints, Compensation, Other issues to know about submitting an article for consideration:

If you feel your piece has not been considered fairly, you can raise your concern to the HPG Advisory Committee by contacting the logistics contractor. The current logistics contractor is Community Health Institute / JSI, 603-573-3306.

Please be aware that authors are not compensated, monetary or otherwise, for articles that are published. This blog is a public service to the residents of New Hampshire and a part of the HPG’s overall mission to plan comprehensive services for both HIV Care and Prevention in New Hampshire.

Again, welcome to the HPG blog.