Monday, September 19, 2016

Turning 60: What Long-Term HIV Survivors Should Ask Their Doctors

Credit: Vrabelpeter1 for iStock via Thinkstock

August 5, 2016


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Nelson Vergel has served as an expert for TheBody.com for many years. Recently, he answered a question from a fellow long-term survivor who is turning 60 and seeking advice about what to discuss with his provider. Here's what Vergel said:
 
By turning 60, you have achieved something that most people living with HIV never thought possible. I am sure you have developed many skills to remain healthy and optimistic as you age with a disease that has killed millions.

I am right behind you (57 years old and 33-plus years of infection), so I have been actively researching the HIV and aging topic by necessity and as a way to remain in control of my health. I believe that it is our job to remind our busy health care providers about new guidelines for people like us.

Over a quarter of people living with HIV in the United States are now over 50 years of age. Like all aging humans, there are things we need to monitor. Unfortunately, it has been shown that some aging-related conditions occur more frequently in people with HIV, so we need to remain empowered and resilient as we challenge this pesky virus at its own game.

Some bodily functions are monitored almost automatically when we visit our HIV physicians:

  • Lipid, kidney and liver function. These tests are included in three cheap blood test panels considered part of the HIV standard of care (complete blood count, comprehensive metabolic panel and lipid panel).
  • Blood pressure, temperature and weight.
  • CD4 cells and viral load. Some clinics are checking them no more frequently than twice per year in patients who have been on stable, successful antiretroviral regimens).
Other important tests can fall through the cracks:

  • Electrocardiograms are an important cardiovascular test that should be imperative for HIV-infected patients -- but even in socialized medicine settings such as the UK it can fall through the cracks.
  • Colonoscopies.
  • Hormone blood level tests, especially total and free testosterone, thyroid stimulating hormone (TSH) and free T3. Blood levels of testosterone and thyroid hormones (TSH, free T3 and free T4) are not tested unless patients complain about symptoms including fatigue, low sex drive, low mood, fat gain and cold intolerance.
  • DEXA bone density scans every few years. This is one of the more neglected tests since many clinics wait until you have a fracture. A DEXA scan is usually done at a hospital or radiology clinic with a referral and order from your doctor. HIV in itself, low testosterone and thyroid levels and tenofovir disoproxil fumarate (Viread), an HIV medication, can decrease bone density.
  • Anoscopies to detect anal warts and/or dysplasia. Anal cancer is more common among long-term HIV survivors, and very few doctors are trained to detect it with high-resolution anoscopies before it progresses to a concerning state. Even a basic digital rectal exam (not only for prostate) can be lifesaving in some resource-limited settings since it can detect unusual growths in the anal canal. I highly recommend watching my video interview on the subject, which mentions the ANCHOR study that many people can join.

Streamed live on Oct 26, 2015
Men who have anal sex with men (MSM) are more likely to get anal HPV than men who only have sex with women. Researchers estimate that the prevalence of anal HPV among men who only have sex with women is around 15% while anal HPV prevalence for MSM is around 60%. If you add HIV into the mix, infection risk goes up still—one study published by HIV Medicine found that 77% of MSM with HIV were also infected with anal HPV; another study published by the Journal of Infectious Diseases found that over 90% of MSM with HIV were infected with at least one strain of HPV.
This increased risk extends to the strains of HPV known to cause cancer, with about a third of MSM living with HIV shown to have HPV type 16. MSM with HIV are also more likely to go on to develop anal cancer, with incidence rates per person-years as high as five times that of HIV-negative MSM. According to the CDC, men who have sex with men are about 17 times more likely to develop anal cancer than men who only have sex with women.

Panel Participants

Dr. Joel Palefsky is the Chair of the HPV Working Group of the AMC and is the head of the AMC HPV Virology Core Lab. He has extensive experience in studying the biology of HPV infection, HPV infection in HIV-positive men and women, HPV vaccines and in the design and implementation of clinical research trials of HPV-related disease. He has published over 250 papers and is the PI on several laboratory-based and clinical research studies of HPV-associated neoplasia, particularly in the setting of HIV infection. Anal dysplasia occurs in men and women and is especially common among patients infected with the human immunodeficiency virus (HIV). He also specializes in the biology and development of new treatments for HPV and Epstein-Barr virus. He is the founder and president of the International Anal Neoplasia Society and President-elect of the International Human Papillomavirus Society. He is actively involved in training students in clinical and translational research and has led the Doris Duke Charitable Foundation (DDCF) program at UCSF since its inception in 2001. He was the head of the Roadmap T32 student research program in 2005 before it transitioned to the TL1 program, and has been the leader of the Clinical Translation Science Awards (CTSA) TL1 program at UCSF since its inception in 2006. Dr. Palefsky plays an active role in promoting student research programs at UCSF, advising and recruiting students supervising their research and providing active career guidance. He has won numerous student teaching awards.

Jeff Taylor  is a 25+ year survivor of AIDS and cancer, and has been active in HIV research advocacy since enrolling in the ACTG's first AZT trials in the late 80's.  He served for five years on the ACTG's Community Constituency Group (now CSS)--where he was the community liaison to the Complications Research Agenda Committee (now OpMan), and was on the ACTG's original metabolics focus group formed to study emerging lipodystrophy. Currently, he continues to serve on the UCSD AntiViral Research Center's Community Advisory Board, the NCI's AIDS Malignancy Consortium as a community representative to their HPV Working Group and ANCHOR Study, DHHS AntiRetroviral Guidelines Panel, co-chairs the community advisory board for the CARE Collaboratory, and on the Program Committee for CROI.  He also serves on the AIDS Treatment Activists Coalitions Drug Development Committee--which meets regularly with pharma and FDA on HIV drug development issues. Locally, Jeff produces a monthly treatment education series on HIV treatment issues for HIV patients & providers, serves on the regional Ryan White Planning Council, and co-chairs the Client Advocacy Committee of the Desert AIDS Project.
  • Waist-to-hip ratio measurements. This is a seldom-done measurement that is important for determining whether we can qualify for treatment of HIV lipodystrophy-related deep belly fat, which can increase cardiovascular risk and decrease quality of life. Increased waist-to-hip ratio is correlated with increased visceral (deep) fat that can cause metabolic and quality of life problems. Here is an interview with one of the world's top experts on the subject.


Published on Jul 11, 2016
Nelson Vergel from PowerUSA.org interviews Dr Steven Grinspoon from Havard Medical School about what we know about HIV lipodystrophy associated fat accumulation. Dr Grinspoon covers potential causes and treatments. For more information please refer to the closing image at the end of the video. 
  • Assessment of any inflammatory-related conditions. HIV is an inflammatory disease that may increase the incidence of certain conditions as we age. This remains speculation since no studies are yet looking into this issue. Nevertheless, it is important to keep a watchful eye out for early onset arthritis, inflammatory bowel disease (IBD), skin and sinus issues, body aches and other inflammatory-related problems. I have been diagnosed with IBD and mild arthritis, so I am hyper aware of this issue.
Although activists are frustrated by the lack of practical research on aging with HIV, there are over ten studies actively recruiting older HIV-positive people.

TheBody.com's Aging With HIV Resource Center is the best and most comprehensive resource page for aging with HIV.

Moreover, Let's Kick Ass, a national movement of long-term survivors, needs help and volunteers as they create chapters in different cities.

Last, but not least, I will shamelessly plug my own resources:

  • ExcelMale.com, one of the larger and better-moderated men's health forums on the internet focuses on increasing health, potency and productivity in men.
  • The HIV long-term survivor Facebook group (2600-plus members).
This is a very expansive subject, so trying to compile all resources runs the risk of excluding some great non-profits and programs; I apologize if I forgot anyone!

I hope to see you on one or several of our HIV and aging online orbits. Stay healthy and positive (no pun intended). Many of us are transcending expectations as we navigate the wiser but often humbling seas of aging with a chronic condition.

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