Disclosure – Your Friend David

(Although this story is based on a real situation, the exact details and identifying information have been carefully removed. This story is to raise awareness on a particular situation affecting PLWHIV, and has no base in absolute truth.)

 

He’s been out of work for a while now. It’s been a long battle with AIDS, then the nerve pain, but now it’s the stark reality that his disability checks are ending. He needs income now.

And so he begins to place application after application in. The process is so much different now after the time he spent disabled. They want so much more, and they want it online. It’s a cold process of keywords and no call backs. No one seems to take his situation well.

Then one call comes back. It’s a minimum wage gig but anything is better than nothing. He sets up the interview, and prepares to snag this job. It’s in the bag, he interviews very well.

The interview comes and goes, he is honest about his physical limitations, and that he doesn’t feel that any special accommodation should need to be made, no mention of his HIV status has been asked for, as that is not important in this job. There is zero risk of transmission doing any part of this particular job.

He waits and then gets to on boarding for the job. There is paperwork and more paper work, but then something makes his hair stand up on his neck. They require him to explain his medical condition in depth for the last 7 years. They want to know diagnoses, procedures, hospitalizations. This doesn’t seem right but he needs this job.

He tells the HR representative of his reservations, and it is explained that it is a condition of employment. Reluctantly he submits, and gives them the info. What could it hurt, they have confidence in him and he feels that it should be returned in kind.

 

Two days into working and he is summarily fired. At will. He wonders why and now feels that his disclosure may have had a role in this. He is scared and at a loss. What should he do?

There are laws that protect from this kind of discrimination. The Americans with Disabilities Act protects workers from work place discrimination based on a medical condition, and requires that if an employer hires a person with a known condition, they must accommodate reasonably.

When you are asked about your medical history, if the job doesn’t warrant your disclosure you should politely refuse, and if it is a condition of employment you should ask how your information will be used, stored, and protected. This is a basic right.

Now there may be jobs where the risk of transmission exists and your employer may need to know your status, but that is rare, and in most cases even with a viral load, you are unlikely to expose anyone to it. In my case I want to be a CNA and they will need to know that my viral load is undetectable, and my immune system is back so I won’t be a liability in nursing. But that is sometimes a risky situation, and is expected. If there is no risk in your job, you do not have to disclose. It’s that simple.

Look up your local Center for Independent Living, or ADA representative if you feel discriminated against. Remember that most jobs like this will be “at will” and they have the right then to fire you for no cause whatsoever. They don’t have the right to fire you for a medical condition without reasonable accommodation. You need to report this to the EEOC as well.

Stigma should never be allowed to take anything from you. You have the right to live and to be a functional part of society. Protect that right.

 

In Unconditional Love,

Your Friend David

National Women and Girls HIV Awareness Day – Your Friend David

National Women and Girls HIV/AIDS Awareness Day is a nationwide event to promote HIV awareness, prevention, testing, and treatment to lessen the burden of HIV in women and girls.

 

HIV owes a huge debt to us. Especially women who live with HIV.

 

Your sexuality has been hijacked. You already are limited access to birth control, and to legal abortion. You have been used as a sexual being, but never allowed to choose it for yourself. Men of power in the entire world are being ousted as predators, and rapists. We see it everywhere, but HIV was the most insidious.

HIV didn’t steal anything that wasn’t already stolen. It stole your ability to feel. Every single time you felt something from a person, all of a sudden the fear that you could somehow put them in danger, or you could be in danger yourself crept in. It kept you from loving. It kept you from feeling.

On National Women’s and Girls HIV Awareness Day, I call you to take your sexuality back. It is now time to understand that if you take control you can be a force for change. You can prevent HIV.

Get tested, and know your status. This is key. Once you know you can get into care, and once you are in care and it is effective you are at no risk of transmission. You can prevent the spread just by knowing your status.

Stay in care. By following your doctor’s orders and maintaining an undetectable viral load, you are preventing the spread of HIV and protecting your loved one. Staying in care ensures you have the right to a full sexual life, and you are in control.

Spread the word. Take your sisters to get tested. Help them to stay in care. Be there for their ups and their downs. HIV is still a scary thing, so getting involved in support groups, or online groups will help you to connect to others. You are not alone, and you are your sister’s keeper.

We are the Undetectable Generation! We will defeat HIV, one sister at a time.
To all my Ladies! Take back your Sex. Take back your Love.

 
With Unconditional Love,
Your Friend David

U=U My story about HIV treatment

I was diagnosed HIV positive in 2012, well after the scare of HIV being a life sentence. I acquired it from a partner that I trusted and loved. I have a few lifelong issues that put me at a higher risk of being infected. I believe I had HIV from 2004 onward. I was completely sick, all over my body and scared for my future.

I walked back into my apartment, after the long trip out of town to get the test, terrified of the future. I had a new life partner at that time, one who I infected because I did not know my status. I felt like I put a gun to his head and pulled the trigger. I was a criminal in my own mind and I felt that cold hand of death on my shoulder. I knew I was going to die, I just knew it. And I knew he would too.

So, we soon got into treatment and soon we recovered. We learned about “viral loads” and “CD4 counts”. We were educated that if the medicine were to work, that the virus could be killed from our systems and our immune systems would begin to recover. We were never told exactly what that meant, other than the medicine was working.

Years went by, I recovered well, and so did he. We became undetectable in about 6 months. It was a miracle to me, I survived! That cold dark death was off my soul. I could try to be normal as I could.

I was told all my life that once you were HIV positive you would never have the same kind of sex life, you could never be a healthcare worker; you were never going to be truly well again.

It’s like being told all your life that bunny rabbits were evil, and would kill you on sight. That they were the worst things on the planet and you should never be in contact with them. You could die, and your family could die. When that is what you hear all the time, you begin to believe it. No one said otherwise and so I completely believed the stigma.
So we tracked our progress, and celebrated the success, but I never felt like I could be with him again. I could reinfect him. I could cause a super infection and just the thought of human contact became a trigger for panic attacks and depression.

I am an internet savvy guy. I researched how to help the ARV I was taking work better. I learned about diet and exercise, I learned about meditation and behavior modification. I assisted in my recovery in every way. It paid off, I’m healthy now, but somehow I was still scared. My lover became distressed and the relationship fell apart. I couldn’t even hold him anymore. I was truly terrified.

So when one day I begin to hear on the interwebs that being undetectable was not just the goal of treatment. Undetectable could mean that I might not pass it on to another person ever again. As long as my treatment was successful, I was now safe. I didn’t believe it.

Rabbits are the enemy and they will kill you, but they are cute and they may not all be evil. Some may even be friendly and might just love you back…. Blew my mind.

The noise became a cacophony of science. Countries started to disseminate information that I thought was quackery. Could I be safe now that I was undetectable? Was it time that I embraced this notion and move on? Was this the good news I needed my friends and my family to know, that they were never in any danger, and now even less danger?

Effective ARV treatment means bringing down the viral load in your system. This I knew and trusted. More and more countries were adopting this Undetectable = Untransmittable message. But the US had not just yet got there. I chose to believe in the science from my own country, a world power, the forefront of medicine.

And then one day, years later in 2017 I was scrolling through my Facebook groups and blogging and researching and I saw the most amazing thing.

The CDC posted new information. They now knew the Undetectable meant I could not transmit this virus anymore. As long as I kept up the protocols, I would never have to deal with that fear again. I printed the information and took it to my doctor. I needed him to tell me this was true.

He initially didn’t. Initially he was a skeptical as I was. Now he treats all STI infection so he will always say that I need to use protection, but he continued to worry about confection and risk.

I kept researching and I kept seeing more and more countries accepting the new facts. Those damn rabbits were being elusive and maybe they might not be as dangerous as we all thought.

This brings me closer to now. Just about 6 months ago I walked into my doctor’s office, and sitting there pinned to the scale to measure my weight was a sign.
U=U was all it said, but it said more to me than anyone knew.

The discussion changed. The exciting news was overwhelming. I fell into tears. I could love again! I could have a happy and meaningful sexual relationship with a partner and I could lose the fear that my allergy to latex and my choice of enjoying sex without a condom only meant that I could catch something else, or pass something else on. NOT HIV!

I needed to tell the world! I started to tell my HIV community, where I was met with their fear. They were more than skeptical of this info even though the source was sound. They refused to believe the medical staff, and the many advocates that brought all the info they could read to educate themselves.

I believed now. The rabbits are harmless, it was all a lie, and I bought it. You bought it. We all bought it. And well it was totally and completely wrong.

When you are told that something will kill you all your life, you will learn to believe it and it will take much time to change that opinion. This post will not be enough to change some of your minds and I know this, but I am a rabbit, and I am cute, cuddly and an herbivore. I don’t want to kill you and I never did.

Being undetectable means you can never pass the virus to another partner no matter how you choose to love.

This is my story. This is my new life given back to me. It’s your story tooNever choose fear over science. Never give up on the facts for the stigma. Bust the stigma and spread the word! We are FREE!

So, today I need you to convince your friends that those vicious rabbits are not what we were told. We need to focus on testing and treatment, not continued fear and stigma. It’s a win! And we need to celebrate it!

I encourage you, if you are in the Central Brevard area to come to the Central Brevard Sharing center. Twice a month they offer confidential testing to anyone who walks in. Once you are tested and you know your status you can begin treatment, and once you begin treatment you are on your way to freedom. You will soon be undetectable, and then you will be untransmittable.

Science not Stigma, Facts not Fear! We are the Undetectable generation. We are stronger than HIV.

If you need more information or you want to talk about this please comment and share this post.

You can find me on Twitter @CrimsonAdvocate, or on Instagram @CrimsonAdvocate. Check out my Facebook page @CrimsonAdvocate. Shoot me a message and I will help you to understand.

With unconditional love, and no fear in my heart!
Your Friend David

Undetectable equals Untransmittable

Five years ago I was diagnosed with Advanced HIV. I was suffering from endless respiratory infection and cytomegalovirus retinitis, which left my retina detached and my right eye blind. I had asymptomatic syphilis, and systemic thrush. My teeth were wearing out and my body was wearing away.

I soon found myself on the Ryan White program and on my States ADAP program, which provided me access to AIDS drugs. I was prescribed Stribild and other medications to suppress and clear the infections and the viruses.

In six months I went from a viral load of over 100,000 copies per ML to UNDETECTABLE. Me and my Doctor celebrated the news in the office. Like fools we were shouting and carrying on, the nurses had to check on us. It was insane!

Being UNDETECTABLE means there is not enough of the virus left in the blood stream to actually measure by the blood testing that is normally done. This is the likely outcome of effective antiretroviral therapy, and means the medicine is successfully working to suppress the virus.

When I became undetectable medical science was debating just what the idea of “UNDETECTABLE” really meant for the patient. Would this mean that there would be so little of the virus in the body as to prevent the infection of another person? What does this mean for long term survival and long term care? Will this finally be the stigma busting tool we need?

 
I believe, YES this information is the best stigma busting information that we could have hoped for!
The CDC now recognizes that having a sustained UNDETECTABLE viral load lowers the risk of transmission to ZERO.
“People who take ART daily as prescribed and achieve and maintain an undetectable viral load have effectively no risk of sexually transmitting the virus to an HIV-negative partner.” – CDC.gov September 2017.
This means that, not if but when you get into effective ARV treatment, and you are compliant to the protocols, you will get to an UNDETECTABLE state, and then be unable to transmit the virus. There is zero risk of transmission, and no other science exists that refutes this fact.

 
I can now have sex, eventually with an informed partner, and have sex without the painful allergic reaction I have to latex. My partner can rest assured that as long as I maintain an UNDETECTABLE viral load they are in no danger. I feel so free with this fact.
I can be a health care worker and I cannot pass this virus to any one of my patents, residents, or clients. I am as safe as any other health care worker and as long as I maintain my health I will always be.

 

 

I invite you to visit the “U=U” movement’s web site at: www.preventionaccess.org
While you are there please look at the downloadable online resources available at: www.preventionaccess.org/resources
https://www.cdc.gov/hiv/risk/art/index.html : Is the CDC official statement regarding viral suppression and effective ARV treatment, assessing zero risk of transmission
EDUCATE YOURSELF. You have rights, and when you don’t fully understand them, that’s when your beliefs can be twisted to support the stigma and fear of this condition.

“All people living with HIV have a right to accurate and meaningful information about their social, sexual, and reproductive health.” Prevention Access Online

 

If you have any more questions, or would like to discuss this topic more, please comment, follow, and like. I want you to be informed, and educated. Stigma can be defeated by accurate and informed data. We can end this once and for all!

In love unconditionally,
Your Friend David

 

 

Stigma be damned! – Becoming a Health Care Worker with HIV

I have so many doubters in my life. So many people who cannot fathom how or why I have decided to recertify as a CNA, and enter into being a health care worker. I hear it from all corners and it’s been never ending since the idea came to be.

“You can’t work in healthcare if you have HIV”
“Your vision loss can be dangerous and you can’t work like that.”
“Your just not physically able to do anything anymore, so why this?”

I have heard it all and I have heard it constantly. I have a few things to say about this, and I hope you haters are listening because this is really for you.

In the State of Florida, the Board of Nursing cannot bar a person solely for being HIV positive. With adequate ARV treatment and proper universal precautions, there is little to no risk to the patient or to the health care worker. Eat that you blood suckers! The law is clear!

Oh, and let’s talk about my ability to see. I have been blind in my right eye long enough to have adapted to my body’s ergonomics and I have adapted to every situation I have been in. I was told I would never work on a computer again. I would always be blind and that it would not get better, but would get worse. I would never recover. Bullshit.

In every way I have recovered from my blindness. Yes, I physically cannot see out of my right eye, and I have low right side peripheral vision, but I have been a CNA and I know the job. My eyesight is more than adequate for the job. I have very good vision in my left eye, and the condition is stable. If I can beat a video game, use two computers at one time, and see enough to walk through my neighborhood for 3 miles a day, I have proved them all wrong.

I am watching a little lady right now, and I do that just fine. I am confident in my ability.
I can lift, push, pull, and move 50lbs or more. I am already hepatitis A and B immune, and have a recent negative TB test. I have a clean criminal and civil record. I have more than enough training. I am in all ways able and competent to be a CNA.

I admit, there is a small part of me that is doing this just because they are saying I can’t. I guess it’s a character flaw of mine. It feels like a dare to me.

“You can’t do it… NANANANA”, like a child’s school ground dare. “I triple dog dare you!”

I accept the challenge, and Ill raise you with my other obligations. I will not accept that this is it, and I should accept the end. I am a warrior and I am fighting on.
The haters are going to hate. I will never give them any of my joy. It’s too late for them now; I’m on a rocket ship to my dreams. Doubt me, and watch me bust that doubt. Stigma be damned.

Stigma be damned!

With love,
“Your Friend David”