My journey living with HIV began 20 years ago and from that moment I became my own advocate in making sure that I received the quality of care I needed to thrive. It was early on when I learned very quickly the importance of health literacy and making your voice heard. It was in 2003 that
I started my first HIV treatment regimen and during that time if your CD4 count was not less than 500, the doctor would not start you on meds. However, with all the information provided to me I made the choice to begin right away.
What I didn’t know was that I was about to experience side effects that would be hard for me to tolerate. It was so bad that I asked my doctor multiple times to switch me to a different medication. Each time the doctor said no, and I felt like the doctor was not listening to me. So I began doing some research of my own by searching the internet, reading magazines, watching videos and asking different individuals within the community their personal experiences.
Since my doctor wasn’t hearing me, I decided to take matters into my own hands and stopped taking medication. I knew it was risky because I learned that resistance could occur when you are not taking it as prescribed. This is where advocating for myself as it relates to care and treatment ignited.
Now the world looks even brighter and possibilities seem limitless to me because of new advances that are being made in medicine. It was almost two years ago when I began inquiring about taking injections for HIV treatment. The reason why I decided to be on the injectable is because I wanted to utilize the best or the most advanced science available. I wanted to be a part of that change that’s happening within our community. And being on an injectable regimen is a life changing thing for me because it allows me the freedom not to really worry and stress about missing a dose or leaving my medication at home. I feel liberated and free to move about in life without worrying about a bottle of pills. I can now receive treatment at my doctor’s office every other month and it works for me.
However, it wasn’t an easy process gaining access to the drug. I first learned about Cabenuva when I was a member of the Community Advisory Board at the University of North Carolina-Chapel Hill’s Center for AIDS Research (CFAR). It’s because of my engagement in CFAR programs that led me to having a conversation about getting on injectable HIV treatment once it became available.
...be patient. It’s not going to be an overnight thing because there is a process one must go through in order to get on it. So be patient, listen to your doctor, but still advocate for yourself and make your voice heard.
The process to start involved a lot of work because my medical provider had to deal with my health insurance company and there was so much paperwork that needed to be completed. It took all of us working together to get things going. Then I contracted COVID-19 in 2020 and because I was sick for 30 days with no family around, I decided to move to Washington, D.C. to be closer to my family. However, before I left North Carolina, I finally got approved to take Cabenuva. Now, I found myself having to go back through the same process again in the DMV [metropolitan Washington, D.C. area]. It took me two years to finally be in a position to start my Cabenuva journey.
During those two long years, I went through a lot of emotions. I was angry, I felt disappointed. I often felt confused and overwhelmed about the process. One day I was being told one thing, and then subsequently being told another. I had to really push past all those emotions to get where I am today, taking long-acting injectable HIV treatment. But it took a lot of effort, patience and education about the whole process. Education can help eliminate some of the emotions that may come up for someone who wants to explore new treatment options, because it often may seem like the doctor is responsible for delays and barriers, whereas it’s actually not even the doctor’s fault that the process is taking so long. Often it is really the insurance company that is responsible for unnecessary hold-ups. I have seen some people get on Cabenuva quickly. But for me it took about a year for my current provider to finally process all the paperwork necessary for them to administer the medication to me. And when they began to give it out, I was the second patient in my health facility to obtain access to it.
When I give advice to people living with HIV who want to start long-acting injectable treatment, I tell them to be patient. It’s not going to be an overnight thing because there is a process one must go through in order to get on it. So be patient, listen to your doctor, but still advocate for yourself and make your voice heard. And if the outcome is such that you are not able to take the medication for whatever reason, just know that there are other oral treatments that you can still be on, and perhaps there are treatment options that you can switch to that may be a better fit for you.
But again, be patient. This is a new way to do HIV treatment, and anything new takes time. But I’m hoping that the process to start taking the injectable becomes less complex so that eventually a person can get on Cabenuva within a day or two of receiving their lab results. For those of us who are long-term survivors, who started HIV treatment when pills were the only option, we do sometimes get tired. We get tired of popping a pill on a day-to-day basis. And so having an injection available where you can receive it every two months is life changing. It’s life changing mentally, it’s life changing physically and it’s life changing spiritually as well. It just changes your life for the better. You no longer worry about missing a dose or leaving a medication at home and traveling and things like that. It really pushes you to assert even more control over your own health.
HIV treatment for me means that I have an opportunity to live my best and complete life. That means that I can still do all the things that I want to do. Treatment allows me not to really worry about a lot of things and I can focus on achieving all the things that I want to accomplish in life.
Despite my frustration waiting to get approved for Cabenuva, I still stayed on my daily oral medication until the approval went through. But the biggest thing is that I didn’t give up—that’s my advice. Keep pursuing what you believe you deserve and is available to you, no matter how long it may take.