Working in HIV outreach and prevention, one of the things we get to share with people is that none of us living in the US has to die of AIDS anymore.
Recently I learned that a young person who’d lived in our county for many years was diagnosed as HIV-positive in December 2022, at a local hospital. This person was never referred to our agency for care. We never got a call, and they were not sent to our local clinic. They never shared the diagnosis with family. They likely didn’t know that there is hope for people with HIV, it’s very treatable. I recently learned that this young person died of AIDS in a hospital in another county.
This shocked, upset and deeply saddened me. Here we are, living in the US, where we have the best HIV medical technology available, including medications that can halt AIDS and even reverse it. But what good are these if people don’t know about them? They may as well not exist.
People in the US who engage in HIV treatment can live to 100. You can survive being HIV-positive longer than most people with Type II diabetes or high blood pressure. Someone who has AIDS can take our antiretroviral medications and in a matter of months they no longer technically have it.
Yes, AIDS can be reversed now, a completely unheard-of idea years ago. For diagnostic purposes a person has AIDS if their CD4 level falls below the threshold of 200. I have observed CD4 levels increase from six and 24 to a robust 800+ in a matter of months on these medications.
In some countries, if you’re diagnosed as HIV-positive, you will still die, a reality that many people in the world face. These places lack the resources to test for and treat the virus.
Sadly, some people still die from HIV-related AIDS in the US too, in large part because many still believe that HIV and AIDS are mutually inclusive. Not anymore.
I’m not suggesting that if this young adult had been referred to us, they would be alive today. But we missed the opportunity to educate them and let them know that they would survive being HIV-positive, that they can live their life to the fullest, fulfilling their goals and dreams, that our agency would take good care of them. But we didn’t have the opportunity to meet , and we will never know whether the outcome could have been different.
I spoke with this person’s mother at length, and promised her that we would change how we do business, with the hope that no one would slip through the cracks in our local medical continuity of care — that we will be on call 24/7 for hospital and urgent-care staff to contact us after hours, anytime they have a patient in their ED/ER who is HIV-positive. They can call us and we will respond to their facility with medications, support and an appointment for that patient, and make sure they know they will survive HIV and live a long time.
As a fast-track clinic we can start people on HIV medications when they test positive or even preliminarily positive. We have staff on call Monday through Friday after hours and over weekends and holidays to respond to these emergencies.
We can mend the cracks in our local healthcare continuum and make sure no one falls through them again. We can resolve this at a local level, and we are committed to providing these services, to prevent another unnecessary death due to HIV and AIDS.
We have the medical technology to reverse AIDS, but it means nothing if people are not educated about it. We have to be able to talk about this virus publicly, just as we do with other health conditions. We have an ethical obligation to provide education to everyone, letting people know that HIV is treatable, that you can survive and thrive with HIV. We have an obligation to our community and society to talk about STDs openly, acknowledge that they happen and spread the word that they are either treatable or curable.
Whispering about HIV and other STDs increases and perpetuates stigma about them. They’re just as communicable as the flu, Covid or pink eye — we get them, it’s human, and there’s no shame in them.
I don’t care who you are or what you have, it’s not your fault, and no one deserves these viruses, they just happen. If you have any form of unprotected sex, including kissing, you can get one or more of these. In the US today it’s the stigma, shaming and blaming that kills. We have to stop the judgment and start talking with one another, just as we do about cholesterol, trans fats, smoking and other health issues.
This is Hedda Fay, with a heavy heart, yet hopeful that we can be the instruments of change by starting to talk about STDs and that HIV is treatable. Please, share this information with five people and ask each of them to share it with five more. Pretty soon the whole county will know that it isn’t a death sentence. Help effect change locally, lives depend on it!
Hedda Fay, the Community Outreach and Program Manager of Northland Cares, answers your questions about sex and sexual health.
