How I’ve Protected My HIV Health

By Timothy Hinkhouse

From PHN Issue 31, Winter 2017

I have been going back in time with my thoughts to when I was newly diagnosed with HIV in 1990. Some serious thought has been put into how I’ve managed to live this long, so many years beyond the original expiration date given by the doctor who broke the news to me. I was 19 when I was told of my HIV diagnosis. With the lack of medications and knowledge of how to manage this disease, I was going to die before I was 22 years old. So I was told.

In 1998, I was introduced to a protease inhibitor called Crixivan. It kept my CD4s (the white blood cells that HIV attacks) elevated, which was being monitored to follow the virus at the time. One side effect was the “Crixivan hump” on my neck. This medication that was designed to save my life made me deformed. 

In around 2010, I was prescribed a four-pill combination: Prezista, Norvir, Combivir and Viread. I was transferred to another prison that was three hours from the nearest Department of Corrections pharmacy. I had problems getting my meds refilled there. The ordering was slow—the return was slow too. 

We were supposed to mail our blister pack stickers to medical seven days prior to running out of meds. This was the buffer to order and receive med refills, so we wouldn’t have to skip doses. (Skipping doses of HIV meds should be avoided at all costs, because it can build drug resistance.) In 2011, it would take up to three weeks to get all of my pills. Each med would come in at a different time, even if I ordered them all on the same day. I couldn’t take two or three pills of the four-pill cocktail. I would go days without being able to take any of my meds. 

My blood work would show the doctor that I was missing doses, because my viral load (the amount of HIV in my blood) would spike, so he took my meds out of cell and I had to go to med line twice a day. When possible, it’s best to get your meds in your cell, because then your med schedule isn’t thrown off by a lockdown, and you don’t have to leave your unit to get them. But now, my meds were in the control of the medical department. I was told I shouldn’t have to worry about them being refilled, but the nurses were neglecting the pill counts and not reordering them on time. I was still missing doses, and it was not my fault, yet my doctor blamed me for the discrepancies in my viral load and CD4 counts.

My only recourse was to use the grievance system, which didn’t fix anything immediately. I was determined to create as much chaos internally with the medical department as I possibly could. I read lots of case law as well. My health wasn’t deteriorating at a rapid pace, so I wasn’t scared. I had friends help, talking me through this time, too.

Filing a grievance is necessary before an incarcerated person spends the $350 on a lawsuit. It shows the courts that the administrative process was used first. I used the prison grievance system to show the Oregon State Board of Nursing that I was keeping records, and the response given at each level. As an inmate I am held accountable, so why can’t the people who work here be held to a professional level of accountability?

They messed with my life and health, so what better way to push back than mess with their career and license? Open investigations were conducted on all the nurses named in my complaints to the Board of Nursing.

The nursing staff now take me seriously. I don’t have any complaints about the medical personnel now. I want to encourage you to look at your state board of nursing rules. Look for “Conduct Derogatory to the Standards of Nursing.” These are their rules to follow first.

I want to also encourage you to write letters asking for help on any HIV/AIDS issues or if you’ve faced discrimination. Write to the following people, or have your people call them:

Lambda Legal
120 Wall Street, 19th Fl.
New York, NY 10005-3919
(212) 809-8585

Manager of Accreditation Services
National Commission on Correctional Health Care
1145 W. Diversey Parkway
Chicago, Illinois 60614

Good luck with your fight to stay healthy with HIV.

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