Why I am Walking in this year’s 9th Annual Vincennes AIDS Walk

“Earlier this year Daniel Ashley Williams lost a dear friend from complications due to AIDS. On March 17, 2018 Danial walked in the Vincennes AIDS Walk to bring awareness to the fact that people are still living with HIV/AIDS and that they can still die from it and to honor the memory of his friend” 

Why I am Walking in this year’s 9th Annual Vincennes AIDS Walk.

Daniel Ashley Williams

My reason for participating in the walk this year is one of sadness but also remembrance and hope. In early January 2018 a friend of mine, someone who I have known for several years passed away. Although he was HIV positive, he refused to take medications. He was healthy for a long time until he got Shingles last fall and was sick or didn’t feel well from then on. His husband took care of him as he got worse and unable to walk. He went into the hospital and after five days his husband lovingly put his head on his chest and held his hand, told him he knew he loved him and that he loves him. Then he was gone at the young age of 36.

He wanted a cure. But after the AIDS coalition disbanded he feared that would not come to pass in the coming future. He felt the political climate had changed against the LGBT community.

He loved being a husband. Married only for four years of their twelve year relationship. He served in the Navy. He was smart and adventures. He will always be missed by his husband, his beloved dogs, and friends.  He will not be forgotten.

AIDS Walk is my way of honoring his memory. I walk for myself being positive since 2009, and I walk because it’s the year 2018 no one should die of a condition related to AIDS. Because I take HIV medications and my viral load is suppress, effectively I have no risk of sexually transmitting HIV to a HIV-negative partners. Take responsibility and protect yourself get tested. HIV/AIDS is treatable and preventable.

Changing meds

Daniel Ashley Williams

On average a person living with HIV will visit their doctor and have Labs drawn every three months. This is done to determine not only the effectiveness of the antiretroviral drug combination on the HIV virus itself but also how they’re affecting your body. This is an important process in the treatment for people who are living HIV.

Some of the labs performed from the blood and urine collected:  A CD4 count measures how many CD4 cells are in your blood. The higher your CD4 cell count, the healthier your immune system.  CD4 Percentage: This measures how many of your white blood cells are actually CD4 cells. This measurement is more stable than CD4 counts over a long period of time Sexually Transmitted Disease (STD) Screening: These screening tests check for syphilis, gonorrhea and chlamydia.

Not only are Labs important but taking your daily regiment religiously is most important to ones health.

Four months or so now I have been taking Tivicay plus Descovy. Before that I was taking Tivicay plus Truvada. Which I had switch to from Complera and before that many many years on Atripla. Atripla was the first antiretroviral drug I was put on and I never liked it had  many unpleasant side effects that made me feel sick to my stomach, have bad dreams, and feel hung over every morning. Back when I was diagnosed HIV positive, I didn’t start meds right away. At the time guidelines recommended treatment using thresholds based on a person’s CD4 count. Now, current guidelines recommended by The World Health Organization recommends treatment be given to people with HIV as soon as possible following diagnosis.

I switched to Descovy because it’s supposed to be less harmful on my kidneys. It seems to be working fine. After seeing the doctor after being on the new medicine she agreed it was working and felt like it was a good move to change meds. I still have a undetectable viral load.

While talking to a friend, who is also HIV positive, we discussed the fact that Descovy had replaced Truvada. Then he asked why I was mutating? I had to explain to him that it was the newer version of Truvada and switching meds address’ long-term health needs such as lower bone and kidney toxicity risks. I feel like more information on the medicine that we take needs to be available to people living with HIV, especially as more of us live longer fuller lives.

At my last appointment I was made aware that Matthew 25 has a patient portal . This allows me to login and see; upcoming appointments, Recent lab orders, Medications, diagnoses and more
“Matthew 25 Patient Portal is a HealthCare Support Portal facilitates better communication with your physician’s office by providing convenient 24 x 7 access.” This also eliminates the paper version I used to get at the end of every visit. They even have a handy app.

 

HIV Testing & Reflections on LGBT Pride Month

As I say good-bye to June 2017 I wanted to take a minute to reflect on what the month has meant to me. For many reasons June is my favorite month of the year and as just about everyone knows June is LGBT Pride Month with celebrations across the US in every major city. I also celebrate my birth on June 25th, that’s another reason the month is extra special to me. The Supreme Court ruled that gay Americans had the right to marry in every state June 26th which issued a great shift in our society and in LGBT culture. There are also two HIV Awareness Days: HIV Long-Term Survivors Day and National HIV Testing Day.

Daniel Ashley Williams, Photo: Facebook

June 5th is HIV Long-Term Survivors Day. An awareness day to celebrate and honor the Long-Term Survivors of the HIV/AIDS epidemic and to raise awareness about the needs, issues and journeys of HIV Long-Term Survivors (HLTS).

Why June 5th?

A year after scientists identified AIDS they discovered the cause: HIV. On June 5, 1981, the United States Centers for Disease Control and Prevention issued its first warning about a rare form of pneumonia among a small group of young gay men in Los Angeles, which was later determined to be AIDS-related.

Why June 27th?

HIV testing is important for both treatment and prevention efforts. Yet, 13% of those infected with HIV are unaware they are infected. June 27th is National HIV Testing Day (NHTD) and it was first observed on June 27, 1995 and that day is meant to encourage everyone to learn their HIV status. The CDC recommends that everyone ages 15 to 65 have a screening test for HIV. People with risky behaviors should be tested regularly. A question I was asked by several college students at the Vincennes Aids Walk in April was “what is an HIV test, do they have to take blood?” There are different type of HIV testing.

There are three main types of HIV tests:
ANTIBODY TESTS

Most HIV tests are antibody tests. Antibody tests check for HIV antibodies in blood or fluids from your mouth. This is usually done by swabbing the inside of a persons cheek. HIV antibodies are disease-fighting proteins that the body produces in response to HIV infection. It can take 3 to 12 weeks for your body to make enough antibodies for an antibody test to detect HIV infection and the results are ready in 30 minutes or less.

COMBINATION TESTS (ANTIBODY/ANTIGEN TESTS)
Combination tests can detect both HIV antibodies and HIV antigens, a part of the virus, in your blood. A combination test can detect HIV infection earlier than a HIV antibody test can. It can take 2 to 6 weeks for your body to make enough antigens and antibodies for a combination test to detect HIV infection. This HIV testing is done a lab.

NUCLEIC ACID TESTS (NATS)
Nucleic Acid Tests (NATs) look for HIV in the blood and can detect HIV infection about 7 to 28 days after you have been infected with HIV. This test is very expensive and not routinely used for HIV screening.

The window period is the time between when a person gets HIV and when a test can accurately detect the HIV infection. This is based on the level of virus in your body and antibodies to the virus that become detectable over time. In most people, HIV can be detected as early as 2-3 weeks after transmission. In others it can take up to 3 months after somebody acquired HIV for tests to show a positive result. Testing is the only way to know for sure if you have HIV or not.

Please don’t wait until next Just to get tested, if you are sexually active you should get tested every 90 days, you owe it to yourself and to your sexual partners.

 

POZiversary, Yeah It’s a Thing

Daniel Ashley Williams, Photo: Facebook

POZiversary is the act of celebrating the anniversary of one’s HIV diagnosis. Despite all the progress that has been made in the treatment of HIV and despite the fact that HIV is completely manageable for most people, receiving a positive diagnosis remains a challenge. HIV is not the death sentence it once was in the 80’s and 90’s but the sigma is still there and those newly diagnosed can get scared and that’s okay. Still, why would anyone want to celebrate or even acknowledge the day that they received a positive diagnoses?

It’s been 9 years since I found out that I was HIV Positive. When I found out I was positive there were so many fears. There was the fear of telling my boyfriend, there was the fear of the stigma of HIV/AIDS and there was the fear of the unknown. Later on after telling my then boyfriend about my diagnosis he was tested. We found out that his CD4 counts were lower and that he had HIV longer than me and in fact infected me. I was lulled into a false sense of security because we were in a monogamous relationship.

When I was infected in college all I knew about HIV/AIDS or thought I knew was that it can be transmitted sexually and that gay men were at a higher risk for infection. It’s a common misconception that gay men in relationships are at less risk of HIV and they tend to get tested less frequently then single gay men. There is also a high frequency of gay men in relationships or with their main sexual partner(s) that do not use condoms.

HIV can be transmitted between sexual partners and if condoms are not used there maybe a false sense of security. It’s assumed that everyone in the relationship or the sexual encounter knows his own HIV status and everyone should know their HIV status whether they are in a relationship or not. I recommend getting tested every three months.

After a positive diagnosis the health department will show up at your door and it can be a very scary thing to have a person from the government come knocking on your door asking a great many personal questions that you may not feel like anwsering. I mean who really wants to talk with complete strangers about their sex life? “How many sex partners have you had?” “How many times have you been tested for HIV and when was it?” “Do you have a phone number for any of the people you have had sex with?” It’s the Health Departments job to contact the people that have had sexual contact with a person that is HIV positive and it’s their job to get those people tested, but the health department will not disclose how they received that contact information. This is so you keep your privacy and there is no telling how someone may react so it keeps you safe as well.

According to the Centers for Disease Control, the estimated Lifetime Risk of HIV Diagnosis in Indiana is 1 in 183. Overall, an American has a 1 in 99 chance of being diagnosed with HIV at some point in his or her life. But that lifetime risk is greater for people living in the South than in other regions of the country. Linking people to care within 3 months after an HIV diagnosis improves their health and reduces the risk of transmission. In 2014, the majority of states with the lowest levels of linkage to care were in the South. According to the CDC in 2015, 39,513 people were diagnosed with HIV infection in the United States. More than 1.2 million people are living with HIV, and about 1 in 8 don’t know it. Make the informed decisions about your health and get tested.

I’m not proud to be HIV positive but I’m proud that I can be open about my status and stand up to the faces of adversity. There are many reasons why a person cannot be open about their status, yet I am one of those people who can and that is why I celebrate my “POZiversary.” It’s like celebrating LGBT PRIDE every year. You are not only celebrating who you are you are celebrating your life and the lives of the people in your community, you are also educating and living by example. You are showing someone else the way out of darkness and ignorance you are shining the light on misconception and sigma. You are showing people who might be afraid, whether they are afraid of their sexuality or their HIV status that there is still light and life at the end of the tunnel, least that’s what I’m trying to do. I’m trying to educate and maybe if I do it right I can give that young kid in college who was just like me, who just got told that he was HIV positive hope, maybe I can let them know that it will be okay. Life will be different but it will be okay. So that’s why I celebrate my POZiversary.

Matthew 25 AIDS Services, INC. is a non-profit healthcare clinic that specializes in the treatment of HIV/AIDS. They are only one of two comprehensive HIV/AIDS Service clinics in Southern Indiana and Western Kentucky. 

 

Ryan White, a Legacy Not Forgotten

Photo: ryanwhite.com

27 years ago this month marks the anniversary of the death of Ryan White. Ryan was the teenager from Kokomo Indiana that after receiving a blood transfusion was diagnosed with AIDS. After his diagnosis in 1984 Ryan and his family faced discrimination and harassment because of the stigma HIV/AIDS had at the time. AIDS was no longer a disease confined to the gay ghetto’s in coastal cities. AIDS had come to the mid-west and it came to a 13 year old hemophiliac.

After Ryan’s diagnosis he was given six months to live, but after beating the odds Ryan was able to get progressively better. Ryan’s mother Jeanne, hoping to keep normalcy in the boys life, asked Ryan’s doctors if he could go back to school. Citing no danger to other students Ryan won the approval from his doctors to return to school. Unfortunately it would not be as simple as that.

Growing up in Indiana we all heard about Ryan White, “The boy with AIDS.” We also heard about the discrimination and harassment that Ryan and his family faced. Fearing that Ryan might infect other students, parents and school officials rallied against Ryan by circulating a petition to have him banned from school. To so many people living in the mid-west the faces of AIDS were promiscuous gay men living in San Francisco or New York. They would see these men dying horrible deaths on the evening news.

Taking the fight to the courts Ryan not only won the right to go back to school he won the attention of the national stage and became a celebrity of sorts. Ryan’s mother became and still is an advocate to the HIV community. She fought against the stigma of HIV/AIDS.

Ryan not only got America’s attention he got the attention of celebrities, one of them being Sir Elton John, who became a sort of father figure to the  boy and started a charity in his name, the Ryan White Foundation. A foundation to help those with HIV/AIDS, a foundation that would look for a cure. By the end of the 1980s Ryan was not just “The boy with AIDS,” he had shown the world that you didn’t have to be gay or an intravenous drug user to get the disease. He was able to show the world that AIDS is not a punishment from God. He was able to show the world that AIDS could affect everyone from every walk of life. After his initial diagnosis Ryan went on to live for five more years.

On April 8, 1990, one month before his high school graduation, Ryan White died of complications from AIDS at Riley’s Children’s Hospital in Indianapolis. 10 days after Ryan’s death President George H. W. Bush signed a bill into law known as “The Ryan White CARE Act.” This legislation provided more than $2 billion to help cities, states, and community-based organizations to develop and maintain coordinated and comprehensive systems of diagnosis, care and treatment, for those living with HIV and AIDS. The bill has been reauthorized twice.

Ryan’s death was not in vain and his life still has meaning even 27 years later. Programs named for Ryan are the largest provider of services for people living with HIV/AIDS in the United States. In Southern Indiana and Western Kentucky the Matthew 25 AIDS Services provides clinical services to nine counties and has offices in Henderson, KY and Evansville, IN. In 2001 they were awarded the Ryan White Part ‘C’ Grant for early intervention services to open a medical clinic.

At a time when there was little understanding of a disease that would decimate a community and fear gave way to common sense a 13 year old boy brought the face of understanding to a nation scared of its own shadow. Ryan White’s legacy lives on and because of his legacy so many millions of people will continue to live on.

 

Does HIV Make Me Undateable, Part II

Gay men living with HIV is what are we talking about.

Over the years since coming out as HIV positive, friends have asked me if my status makes me ‘undateable.’ The answer is “no,” I’m just as datable and I have just as much to offer in a relationship as anyone else. However, it there are several points that need to be addressed when dating someone who is HIV positive. 

While it’s been said, “There are plenty of fish in the sea,” and while I do believe there is someone for everyone, it seems that most men not all but most who are themselves HIV negative will not date a guy who is HIV positive. This can be difficult if you’re POZ because everyone wants to be loved and valued. There are a wide range of men in the world and there are men who do put the stigma of HIV aside and look past the word positive. The key is keeping informed and keeping communication open. Isn’t that the key for all successful relationships anyway?

The terms Neg and Poz have become the new normal in the vocabulary of our community. Sometimes that’s the first thing one asks when meeting. It’s now standard on every profile in every hook up app from Grindr to Adam4adam to BBRT.  You can find it somewhere towards the middle of a guys profile just after ‘position’ but before relationship status. Yet there is another label which we should start using as much as “top,” “Bottom,” or “Poz,” and “Neg.” That label is Undetectable or U=U (Undetectable=Un-transmittable). Undetectable and un-transmittable is when a person living with HIV has an undetectable viral load. An undetectable viral load is typically under 40 copies of HIV per milliliter of blood depending on the diagnostic tests.

The Prevention Access Campaign https://www.preventionaccess.org started U=U or #UequalsU to fight the stigma of being HIV Positive.
 
According to the Prevention Access Campaign’s web-site: “Collaborated with leading researchers to help people living with HIV who are on treatment and who have undetectable viral loads answer a fundamental question: ‘Am I at risk to my partner?’ The answer is NO. You can feel confident that if you have an undetectable viral load* and you take your medications properly, you cannot pass on HIV to your sexual partners.” 

Let’s start using U=U in our online profiles, lets start making HIV positive men feel welcome back in the ‘dating scene.’ Let’s end the stigma. 

As always it’s about choices. Some still choose to practice “Safer Sex.” You will always want to take care of yourself and your sex partner or partners. Safer sex could be the universal protection of wearing a condom or being on PrEP-Pre-Exposure Prophylaxis. Having sex with someone who is undetectable can mean a zero to little negligible risk, as long as they are under the care of a doctor and as long as you and your partner are honest with each other. 

There is a lot more to the story than just Negative or Positive. Inform others, start the conversation and share your story. Be part of the HIV Positive Proud community that live with a chronic health condition everyday. Get support from the people you love, whether is your biological family or your chosen family and remember the only way that you are undatable is if you let yourself become undatable and last but not least always keep a positive perspective. 

*An undetectable viral load is typically under 40 copies/ml depending on the diagnostic tests. However, studies show a person living with HIV on antiretroviral therapy (ART) with a viral load under 200 copies/ml also cannot sexually transmit HIV. This is called being “virally suppressed.”

Does HIV Make Me Undateable? Part I

THE ONLY HIV/AIDS STIGMA IS THAT WHICH WE ALLOW.

What you allow is what will continue.

How you would want to be treated if you were HIV positive?

Normally guys don’t intend to hurt those living with HIV. Yet in referring to oneself as “clean” it is logical for me to assume that this means HIV equates to being “dirty”. Now I’m not saying that every HIV negative person has to choose to be sexually intimate with an HIV positive partner and I understand if an HIV negative person chooses not to be with an HIV positive sexual partner based solely on status, just as I understand if an HIV positive person chooses to be only with a partner that is also living with HIV. Still, choosing to use words or phrases that damage one another to highlight our individual preferences can only divide us further. Don’t allow your status control you. There are lots of people out there who are not afraid to date someone who is HIV positive.

I’m always open and upfront disclosing my status. There is a real stigma in being HIV positive, so it’s important to attach a face to the issue. People won’t even talk to you if they know you’re poz. Then you get the guys who have hyper-fetishized HIV. The gay men is small fringe of the gay community refer to getting HIV at a ‘gift’ and these men seek out exposure willingly. So as a practical reality, having HIV does present problems, but there are however, many men and women who are informed of the risks and who love us as we are. For those people that love us our HIV status does not matter.

“Does HIV make me Undateable?” I find too often the answer to this question is yes. I can’t tell you how often I have gotten to know someone and we had made what I thought was a deep ‘connection.’  Yet when things start to get serious and the subject of HIV came up the ‘connection’ I thought we had disappeared. Then the next thing you know I don’t hear from them any more. I often feel if a guy can’t handle this one aspect of me, then he can’t handle the rest of me and that is not okay. Someone who is not mature enough to handle a relationship with me because of my HIV status shows me that they are probably not mature enough to handle a relationship with anyone. I find that it’s not even worth the effort for me to waste my time, energy, and heart!

More often than not guys will tell me if only I was clean. I didn’t know I was dirty. I refuse to let rejection because of my HIV status make me feel that I am not worth being in a relationship.

“You can never learn to be the person you were before AIDS, or even before HIV, but maybe you can find the person who you want to become after it. Your status isn’t a part of your character…” BY: TYLER CURRY, MARCH 3RD, 2016 Op-Ed: Its Time to Let Go of AIDS

In the Shadow of HIV Relationships are not Always Black and White

I remember the first time I saw Ed at the bar. It was the weekly “Gay Night”. He was standing at the bar by the dance floor, drinking a mixed drink with his circle of friends. He was, in my mind, the sexiest black man I had ever seen and completely out of my league.

A few months went by and we happened to be at the same New Year’s Eve party and  ended up talking, he even sat on my lap. When college classes started back up he and I started texting and we even went out as friends for a drink at a Mexican restaurant. This happened several times. After a night of going out to eat he invited me back to his place where I sat down on the floor by his bed. I guess I was a little nervous. He went on to explain to me he never makes the first move. That gave me the courage to take that chance and we ended up making out. A relationship grew and I moved out of the college dorms and in with him, my boyfriend.

I was accepted, for the most part, by his friends and even his family. On Thanksgiving and Christmas we would go to his mother’s who cooked true “Southern Home Cook’n.” I was the only “white boy” in the house during our holiday celebration, but it never was a problem and likewise at his family reunions, I was made to feel like part of the family, I even took his sister to her prom. He taught me how to twist his hair and use grease, it’s silly but I liked how his hair was like curly lambs wool. When we would travel 800 miles to the North to see my family they left no doubt in my mind that they accepted him without question. When my little sister was learning to talk, she made it a point to learn to say his name before mine.

I wish everyone would have been as accepting as our families. We would get pulled over by the police, this happened more than once and it happened for little to no reason at least none we could see. The police would make it a point to search the car and pat us down. Love is love despite color, age, or race. Love does not discriminate, but we found out the hard way that people do.

Being in an interracial relationship was just like being in any relationship and just like all couples we had our ups and downs. Sometimes relationships change, people change and circumstances change. We had been together for a year when I found out that I was HIV-Positive. I was tested annually at the college health fair and every year my test came back negative. Then the unthinkable happened and my worst fears were realized. There were so many fears. There was the fear of telling him, there was the fear of the stigma of HIV/AIDS and there was the fear of the unknown. Later on he was tested, and he found out that he too was HIV positive, his CD4 counts were lower than mine and it was determined that he had it first and had transmitted it to me.

After we found out he didn’t want to tell anyone about our HIV status, it became our ‘little’ secret. Maybe his silence came from being a proud black man that just happened to be gay, but it was my burden to bare too. He seemed to have become emotionally shut down. We would go to the doctor together, yet we would not talk about the elephant in the room. We never talked about anything having to do with what it’s like being gay and HIV positive in East Texas. He never wanted to talk about the guilt he felt for infecting me, but I could see it in his eyes. It’s hard to keep a secret like HIV to oneself and not feel like you are perpetuating the stigma. It’s doubly hard to be each other’s support system when we all we do is carry our burdens instead of carrying and supporting each other.

I thought we still loved each other. He was my support system, boyfriend, and lover. I would advise against staying silent keeping your status to yourself even in the face of Stigma or harassment for whatever the reason we are all human we are all individuals which makes us all different we must embrace that.