Thank you for the opportunity to speak, Chair.
In the United States People living with HIV Caucus, we are very concerned with accessible, affordable and appropriate treatment globally. We need HIV medical technologies – including treatment and diagnostic tools – in all parts of the world.
I am a gay man of color living with HIV. I am fortunate enough to be virally suppressed; I have really good insurance. And I still nearly did not get treatment for Hepatitis C.
In the US, we do not have universal healthcare. Even in Canada – where there is universal health coverage – this does not include all drug coverage. When I was diagnosed with Hepatitis C in 2014, treatment was available. My doctor immediately prescribed it. And then I waited.
My insurance company denied my initial prescription and I could not afford it on my own. At the time, this regimen cost upwards of $80,000 USD: I have never been able to afford my own treatment.
I didn’t t know what to do. I was very aware of how lethal Hep C could be – my friend Ann Sternberg died of it. My HIV clinic handled the negotiations and I received my medication 3 months later.
3 months of living in fear, afraid of the damage in my body. Drinking daily in order to manage my fear.
When I was an active drug user, those months would have killed me. I would not have waited for the meds. I would have been on a drug binge, unable to manage another medication regimen.
Why did my insurance company not pay for it? The cost. One of their agents contacted me to inform me how much the drug costs, and what the other options were: she suggested sobriety.
I had another drink.
Barriers to access are not just about IP. One real challenge is the cost of drugs.
The cost of Hepatitis C treatment remains beyond most people to pay for on their own. And let’s be clear – Hepatitis C is treatable now. People no longer need to die from it. Yet it remains unavailable due to cost. UNAIDS must do work to analyze and remove this barrier.
Agenda Item 7. Update on the access components of the UNAIDS 2016-2021 Strategy: removing access barriers to health technologies for HIV and its co-infections and co-morbidities in low- and middle-income countries
Delivered by Andrew Spieldenner, United States People living with HIV Caucus (Observer)
Tags: 43rd PCB Meeting