Self-Advocacy, Part 1

I am a big believer in advocating for your own health, regardless if you are newly diagnosed or have been living with HIV for years.

I have been HIV positive for over six years and it wasn’t until recently where I had to advocate for my own health and wellness.

A doctor that I trusted

I was very fortunate that the first infectious disease doctor that I was assigned to after my diagnosis made me feel extremely comfortable and I trusted his advice and his expertise.

I would see him every three to six months for my routine blood work and check-up. These check-ups were to make sure that I maintained a suppressed viral level and maintain an undetectable HIV status.

Satisfied with my doctor and my HIV care

I would talk to him about things going on with my body as well as discuss personal things like my field of work because it related to HIV prevention. He would remember things from our last appointment and ask how things are going with work which made me really feel confident in the care that I was receiving.

In all honesty, I had no issues or complaints with my doctor or the care I was receiving.

Delays in getting routine blood work

I have been undetectable for years and still take my one pill a day like I am supposed to every day. Due to the pandemic and COVID-19, I had not made a doctor’s appointment or done blood work in over six months.

I had not gone to the doctor due to the fact that I was not comfortable going to a hospital so soon during these crazy times. I knew deep down inside that I always take my medication daily and knew that a month or two over would not do any damage if I waited until the COVID-19 rates decreased.

I needed to see a doctor to get a refill

At the beginning of the month, I realized that I only had one month left of medication. I tried to put in a mail-order refill, but I had run out of refills from my doctor. What this meant was that I had to see my doctor before I could request more medication.

Shamed by the new doctor

Knowing that I needed more medication, I finally called to make an appointment to see my doctor again and make sure my status is still undetectable. I got a call from the nurse to book my appointment and she let me know that my doctor of over six years no longer worked there and that they would assign me another doctor.

Deeply disappointed, I accepted the new doctor and was willing to give them a chance. About two weeks prior to my appointment, the new doctor calls me to have a quick check-in. I explain to him that I needed a refill on my medication and will see him in about two weeks.

He then proceeds to tell me over the phone how "irresponsible" it was of me to be running out of medication and that I must go into the pharmacy by this week to pick up my medication. Once I heard this, I was at a loss for words.

Stay tuned for the second part of Steven's story!