For most people living with HIV, being a full-time AIDS advocate is not realistic. But that doesn’t mean most folks with the virus can’t do something to fight the epidemic. Below are 10 ways you can do your part, along with advice and encouragement from several longtime HIV/AIDS advocates.
This year is likely to be marked by many setbacks for people living with and at risk for HIV—including the Trump administration’s promises to repeal the Affordable Care Act (ACA), defund Planned Parenthood and cut the budgets of integral social service providers across the board.
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It means advocating for my health and the health of others. There are so many people that come up to me and tell me because I am so vocal about my HIV status, it has encouraged them to get tested, or get on treatment or make better healthy decisions regarding their sexual health. Also being a hardcore treatment advocate allows me to speak and advocate for those HIV positive individuals that cannot speak up or advocate for themselves. I take being a hardcore treatment Advocate very seriously because my community relies on me.
Being a Hardcore Treatment Advocate means that I am able to let other PLWHA know that they can live a healthier life. Looking back to where I was in 1991, when I was diagnosed with full blown AIDS with a CD4 count of six, and here I am 26 years later with a CD4 count of over 1400 and undetectable. It is all because of treatment. Being a hardcore treatment advocate means letting people know that when you get serious about your treatment you can live a normal life, and you can have kids that are not positive. You are your own Advocate, you know what your body needs, how you feel, what helps you get better or healthier. I am an example of surviving all that I could not believe was possible at one point. It MEANS the WORLD to me that I can be a voice for others that give up hope when they are diagnosed.
Being a Hardcore Treatment Advocate, to me, means being the voice for those who have no voice. I feel very passionate about advocating for treatment when patients feel they have no rights, no voice and will not speak up for themselves. This happens sometimes in the substance using community. There are times that medical professionals will not prescribe medications for people who are using substances, on the premise that they will not be adherent to their medication regimen. That is very far from what I have observed. Individuals who use substances on a daily basis, remember to also take their medications and should have the right to make that decision, as we all do. That is where my advocacy comes in when I speak with physicians.
Being a hardcore treatment advocate means that I am in charge of my health and wellness. It begins with me as a patient by informing my medical providers what works for me and what does not work as a treatment plan for me. Being healthy and staying healthy empowers me to make sure I educate others that are HIV positive that they can do the same.
Being a hardcore treatment advocate starts with me taking care of myself, knowing where my health is at. Educating myself on healthcare, so that I can show people their options and how to navigate through the healthcare system. Allowing people to see that they can live a long and healthy life. Being a hardcore treatment advocate means meeting people where they are at, showing them the way and not forcing them, but instead explain and show them better ways they can get past judgement and stigma. Fighting the good fight to get every man, woman and child good health care and leave no one behind. Fighting an unjust fight to get rid of all diseases and provide people fair and just health care that is what makes me a hardcore treatment advocate.
Being a Hardcore Treatment Advocate means, to me, educating people about the benefits of treatment and being in treatment myself. I try to lead by example, show people the possible life they could have if they started treatment. I check in with newly diagnosed people who just started treatment to make sure they are taking their medication daily. Finding out if they have any issues taking their medication and try to fix those issues. Being a hardcore treatment advocate means that treatment comes before all else, not just treatment for HIV, but treatment for everything; drugs, mental health, other physical ailments. Everything ties into each other. If you only treat one problem then the rest is bound to catch up to you.
That is what being a Hardcore Treatment Advocate means to me.
What being a Hardcore Treatment Advocate means to me is that I can be completely honest and unadulterated with ‘MY’ truth! I do not need to be afraid of being judged nor do I need to be ashamed of MY truth. Being a Hardcore Treatment Advocate also means that I can be transparent with the journey of living with HIV and the struggles that come with treatment adherence…the psychological, emotional and spiritual struggles. Hardcore treatment advocacy also means making myself available to encouraging someone in need of help or support, or just an ear to listen and shoulder to cry on. Finally the Hardcore treatment advocacy in me will show how determined I am to ensure HIVSTOPSWITHME!
In my opinion, being a hardcore treatment advocate means publicly supporting and championing the cause of ending HIV stigma with a powerful, unyielding approach. For me, being a hardcore treatment advocate means being honest with myself first and then carrying my honesty and my truth into every situation. Being a hardcore treatment advocate means standing strong and speaking with authority about the importance of adherence, ending HIV stigma to empower others and to positively impact future HIV initiatives. I am at a point in my journey where I can raise my voice unapologetically and without fear. As a hardcore treatment advocate with the HIV STOPS WITH ME Campaign, I intend to facilitate safe spaces for others who are living with HIV and may be struggling to find their voice.
Hardcore treatment advocate means to me being aware of my health. Taking the steps to take my treatment seriously, attending my doctors’ appointments, taking care of and loving myself, so that those around me family, partner and friends know and see that I am doing well. It also means to me being able to share my story in the hopes of inspiring others and educating those that do not know much about HIV. Being a hardcore treatment advocate means to me being able to combat stigma and not be a voice for just myself, but also for others within my community.
When saying hardcore advocate to me it means that I am a person that cares about his health and well being, and also others. It signifies taking ownership of your health and understanding the system and when the system does not work, it is standing up and bringing it to whoever’s attention it needs to be brought to in order to bring peaceful solutions. But never giving up and keeping the fight everyday for it is worth staying alive and teaching others how to do the same. Speak your mind, ask questions, and be hardcore!
For me, being a Hardcore treatment advocate means going out under the bridges, to the parks, to the most desolate places to find and connect people to care or treatment. This means that you are in the belly of the beast trying to help the most underserved populations which as I know it to be are my peers from the LGBTQ population as well as People who use drugs. These two populations are looked down upon and often do not receive adequate, if any medical or mental health treatment at all. I know first hand what the struggle is about, by me working for New York Harm Reduction Educators. I am out in the streets rain, sleet, or snow trying to get my people into shelter, care, just someplace where we can have a healthy conversation, or trying to get them connected to HASA, Detox, Rehab. A Hardcore advocate is someone that advocates for those who have no voice, those who feel left behind and have no choice, no future. A Hardcore advocate is someone not afraid, or ashamed to promote a healthy lifestyle while using their own shared experiences. A Hardcore advocate educates, listens, advises, and meets people where they are at, they do not try to impose their will onto the person. A Hardcore advocate is me. This is not only what I do, but who I am.
Hardcore treatment means living to me. Without my medications I will not live to see more years to come. For example I was taking the wrong medication a couple months ago and it got me sick within a month my viral load spiked up so high and T cell count dropped, but as soon as I got on the right medication my numbers leveled out. This is why my treatment is so important to me, and I hope everyone will consider treatment.
Being a hardcore treatment advocate for me means that I continue to use my truth to help others. I want people to know that like them I was so scared and felt alone when I first found out that I was HIV positive. I just knew that no one was going to be in my corner, that in fact they would not even want me around them because of my status. Today my experience has shown me that it was all lies that I told myself. Not only do I have my family, but I also have friends and co-workers that love me and support me in my career and they support my choice to become an HIV Stops With Me spokesmodel. Being hardcore is stepping out on some faith and letting the world know that YES!!!! I am HIV positive and it is probably the best thing that ever happened to me.
To me being a hardcore treatment advocate means to lead by example. By taking my medicine on a daily basis, attending my scheduled doctor visits and being informed and knowledgeable about all the new medications for HIV including PrEP and PEP, and anything that can help me live a good healthy life.
Being a Hardcore Treatment Advocate means taking unorthodox methods of promoting treatment. It is my responsibility to be an example to those who may not even know they are positive and show the world that treatment works. Life is actually easier knowing that I have gained control over my health. Having that peace of mind gives me control over my life.