RESEARCHERS & ADVOCATES on Why (continued)
“Living with HIV since 1995, for me, the world feels both fragile and resilient. Each pill is a testament to medical advances yet a constant reminder of my body’s vulnerability. The whisper of stigma is persistent, sometimes louder in my mind than in society. But amidst these challenges, there’s hope. New relationships are founded on deep understanding, communities bound by shared experiences, and an appreciation for life’s ephemeral nature. I’ve learned to harness strength from adversity, understanding that living isn’t merely surviving. I have learned to live with a renewed purpose and an unwavering will to keep thriving, but the hope for a cure is forever in my dreams.”
—ERIKA CASTELLANOS
Based in Belize and the Netherlands, Erika Castellanos is the executive director of GATE, an NGO that works internationally on trans, gender diverse and intersex equality and has partnered with amfAR on addressing the needs of transgender people impacted by HIV in public health policy.
Diagnosed in 1989, Hank Trout is a writer, editor, and longtime HIV/AIDS advocate who lives in San Francisco with his husband Rick. He regularly blogs for San Francisco AIDS Foundation.
“I have lived with HIV for 34 years, nearly half of my 70 years. During that time, the virus has irreparably damaged my body—osteoporosis, lipodystrophy, neuropathy, a weakening of my heart muscle, chronic fatigue, and more. A cure might prevent the virus causing me to succumb to what I fear most: dementia. Also, I think of the hundreds of thousands of dollars spent on the medications I’ve taken since 1996; a cure would eliminate the need for those medicines and reduce the financial burden on Medicare. I hope every day for such a cure.”
Living with HIV since birth, William Matovu is a 29-year-old AIDS advocate and social media influencer from Uganda who volunteers with the Love To Love Organization, an HIV/AIDS NGO he helped found. He is a peer worker at the Joint Clinical Research Centre in Kampala and serves on the U=U Global Community Board.
“We need an HIV cure because the pill burden and long-term medication side effects can lead to treatment failure. Delays in viral load results and extended testing periods create challenges in adjusting treatment plans.
An HIV cure would free us from daily medication, similar to taking a single dose for diseases like malaria in Uganda. This would improve our quality of life and allocate healthcare resources to address other pressing health issues.”
Residing in Valley Stream, New York, Nancy Duncan is a New York State Certified Peer Worker and has been living with HIV for 38 years.
“I believe we need a cure for HIV for several reasons. First, to have improved long-term health outcomes for those of us living with HIV, especially for a long period of time. It would be a great feeling to end the worrying about the harm HIV does to our bodies and to never have to take antiviral meds again! Also, people who are sexually active would not contract HIV anymore if everyone that currently has it were cured and that’s a good thing. It’s been over 40 years since HIV emerged into the national population and stigma is still a problem which needs to finally stop. We need a cure—it’s about time!”
Based in Philadelphia, Asha Molock is an indie filmmaker (Fuel for the Fire: HIV Stigma in The Black Community) and author (The Underground Woman) who has been living with HIV for 23 years.
“How long do we have to continue waiting? After 40-plus years of the HIV/AIDS epidemic, it’s time for a cure that would be attainable for most of the HIV population. I’m 73, so I don’t know if I’ll see a cure in my lifetime, but my concern is for the younger generation of people living with HIV. My hope is that they will not have to wait another 10, 20, 30, or 40 years for a cure. If there is ever going to be a sincere effort to end this epidemic, then a cure is what is needed!”