The Changing Face of HIV/ AIDS in America
September 18, 2013
Briefing: 9:30-10:30 a.m.
Reception: 10:30-11 :30 a.m.
US Congress Capitol Visitors Center, Room SVC 212
AIDS Community Research Initiative of America (ACRIA)
Services and Advocacy for GLBT Elders (SAGE)
National Hispanic Council on Aging
Human Rights Campaign
Gay Men's Health Crisis (GMHC)
Michael Adams, Executive Director, SAGE
Henry Pacheco, MD, Director of Medicine and Public Health, National Hispanic Council on Aging
Lisa Fitzpatrick, MD, Medical Director, Infectious Diseases Care Center, United Medical Center
Nelson Vergel, Director, Program for Wellhess Restoration
Courtney Williams, Community Planner, DC Office on Aging
This was my speech as the only self reported patient aging with HIV:
Thank you for this opportunity to present a testimony on behalf of thousands of my peers who are aging with HIV.
My name is Nelson Vergel. I am the founder of Program for Wellness Restoration, a national peer driven and operated non-profit organization based in Houston whose mission is to improve health resilience and self-advocacy of people living and aging with HIV via wellness programs, national lectures and online education. Despite my seemingly healthy appearance, I find myself at 54 years of age having lived with HIV for almost 30 years. I have spent most of that time trying to successfully control my virus despite having built up a lot of multidrug resistance. In fact, my HIV virus has reached undetectable blood levels only 3 years ago thanks to the use of investigational medications yet to be approved by the FDA.
I’m also currently undergoing chemotherapy for aggressive B cell lymphoma, one of the most common cancers in people aging with HIV. I am actually glad to be here not only because of the importance of this issue but also because I was able to convince my oncologist to give me a week off chemotherapy to come to speak in front of you.
I never thought that I would survive to grow old. Like most long term survivors, I am living proof of the great success of federal investment in research and treatment of HIV. In fact, this success is one of the reasons that by the year 2015 more than 50 % of people living with HIV will be over the age of 50. In several US cities that is already the case.
In my national travels lecturing during the past 20 years I have seen a shift from fear of death to fear of disability while we age with HIV. Most aging HIV+ people that I come in contact with are dealing with health issues earlier than the general aging population. Some people have developed lipodystrophy related body disfigurement, extreme fatigue, neuropathy pain, frailty and other health issues that have made it impossible for them to hold a full time job. These circumstances have pushed many into permanent disability with small incomes that put them under the poverty levels. Others who are doing better want to go back to work and regain their productive place in society and to apply skills they have learned before they went on disability. Unfortunately, funding cuts have left very few support and case management programs to help people aging with HIV to remain productive and relevant while preserving full independence. Most HIV+ people do not know how to navigate the few programs that may be out there.
Clinical studies and our own community surveys presented in HIV conferences show that many of the survivors of the first two decades of this epidemic are experiencing premature bone loss and metabolic problems, body changes, frailty, cardiovascular disease, cancers, and cognitive dysfunction. In fact, some studies show an acceleration of 15 years in our aging process compared to people who are not HIV-infected. Much of that acceleration has been linked to toxicities and increased inflammation even in people with undetectable HIV viral load. This relatively early onset of issues provides researchers an opportunity to study aging in an accelerated model compared to traditional non-HIV studies. It is also worth emphasizing that HIV/aging research offers an opportunity to better understand how infection-related wear and tear on the immune system contributes to aging-related conditions among HIV-negative people. These studies could be enrolled quickly as patients living with HIV are eagerly interested in volunteering in interventional aging studies that could have benefits beyond HIV.
Due to federal investment, academic and private innovation, we now have 8 first line regimens that can treat someone newly infected with HIV. But for some people like me who have been infected for many years, aging is arriving with fears of long term survival. As many of us volunteered for clinical studies that helped get HIV drugs approved, our virus developed accumulated multidrug resistance due to suboptimal regimens used in those studies. We still need early access for combinations of new drugs with new HIV targets while we eagerly wait for a cure.
In my role as a community educator and research activist, I am happy to see emerging studies related to aging with HIV. But most are observational in nature. Your support of investment in interventional aging studies could generate therapies that could not only help 32 million people living with HIV but also the aging people in this room and around the world. That is why it is important not only maintain, but increase funding for NIH-targeted research on HIV and aging consistent with the priorities outlined by a report written by a NIH-convened work group, on which ACRIA participated.
My community strongly urges congress to fully support funding the Ryan White CARE Act (RW) to at least the level requested by the President. RW is vital for many reasons, but notably the median age for older adults with HIV is age 58, i.e., not yet eligible for Medicare and other services funded through the Administration on Aging via OAA-funded programs. Many, if not most, rely on RW funded programs for a host of services, including RW’s AIDS Drug Assistance Program for their meds. And with many states choosing not to expand Medicaid under the Affordable Care Act, RW will remain vitally important as a key source of payment for necessary services for this population.
Like everyone is this room, people with HIV want to age healthy and to enjoy our improved survival. We want our experiences with accelerated aging to be used for the benefit of mankind.