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Personal Story

Negotiating AZT Dosage When It Was the Only Option, and the Problem With ADAP

Part of the Series My First Pill

April 30, 2014

empty wallet

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 We'll be posting readers' My First Pill stories here in our Resource Center on Starting HIV Treatment.

Read other stories in this series.

More From This Resource Center

10 Questions to Ask Yourself Before You Begin HIV Treatment

Are Your HIV Meds Working? Warning Signs and False Alarms

Related Stories

My First Pill: Starting HIV Treatment for the First Time
More Personal Accounts Concerning HIV Treatment

This article was provided by TheBody.

Reader Comments:

Comment by: william (weber) Fri., May. 16, 2014 at 4:01 pm UTC
I get my meds free through research studies. They are drugs already fda approved. I make 80k and would not qualify for assistance otherwise. Been 4 years. Contact your cdc.
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Comment by: John (Newark, NJ) Thu., May. 8, 2014 at 11:06 pm UTC
We know there are thousands of people who don't take meds because they can't afford them, or are financially ruined by paying for them. But we rarely hear their stories. Thanks for sharing this. Maybe we need a section in The Body to collect these stories to help us make the case for expanding government support for people who are slipping through the cracks.
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Comment by: Mitch (Chicago) Thu., May. 8, 2014 at 5:52 pm UTC
You need to contact the drug maker . I didn't qualify for ADAP either so i started calling and filling out forms. In about 3 weeks I received every drug gratis!,some don't care what your income and some took adjusted number. Try it!
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Replies to this comment:
Comment by: Phillip R (Los Angeles) Tue., May. 13, 2014 at 10:43 pm UTC
That's great advice. Something most all of us once knew and often had to rely on. Now with Big Pharm marketing direct to consumers via TV, the spot always ends with; "If you need help paying for your medications, contact.." Well, same still goes for us. Activists got them into the act, now it's good business PR. Whatever works.

Comment by: Debra (Washington state) Thu., May. 8, 2014 at 3:53 pm UTC
You might try for copay assistance
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