Negotiating AZT Dosage When It Was the Only Option, and the Problem With ADAP
Part of the Series My First Pill
April 30, 2014
I tested positive two weeks before I was to sit for the California bar exam. I took the test because I was dating someone who was the man of my dreams and he shared his status with me before we had sex. I went to my doctor, one of the HIV specialists at the time, back in 1986. He said I should start AZT [Retrovir, zidovudine] because I had just 236 T cells. He said I needed to start then. But I had friends who started AZT and they had terrible side effects. I listened to my gut and said, "No." Instead, I waited and watched my T cells drift down.
Finally, I got to the point I had to do something. It was 1988 and I wasn't dead yet, but I was symptomatic. I agreed to start AZT, but I told my doctor at half the dosage. We argued, but this is my body. It made me sick, but I could stand it and I could continue to work. I watched more friends on the full dose get sick and die or just get sick. I did all I could to stay healthy, passed on promotions or other job offers, ate right, worked out and learned to laugh at the irony of the situation, any situation and at myself a lot. I stopped AZT in 1989 and started the notorious D drugs (Thanks for neuropathy, medical science! My feet and hands just love you!) and I got active. I am still here, my doctor isn't. He died in 1989.
I would like to add that ADAP is not meeting the needs of all of us. Because my gross income exceeds 400 percent of the rate of poverty, I do not qualify for ADAP assistance. Last month, my copay for Stribild [elvitegravir/cobicistat/FTC/tenofovir] was $836 and this month it is $1,196. I was off meds for 10 months because I couldn't afford paying a copay. I am moving to Palm Springs so I can get help in California where the criteria is adjusted gross income of less than $50,000 a year. I pay a fortune for medical services and copays and live in an independent living facility because of neuropathy and other health issues. I am not rich, I am not poor. I am just screwed.
What was your first pill? Whether it was AZT or Atripla, we want you to tell your story! Write out your story (between 200 and 1,000 words, please!) or film a YouTube video, and email it to firstname.lastname@example.org. We'll be posting readers' My First Pill stories here in our Resource Center on Starting HIV Treatment.
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