Every year on December 1st the Earth’s nations assemble to observe World AIDS Day, a global health day established to bring people together in the fight against HIV.
Fundraisers, community events and television broadcasts are often orchestrated to raise awareness about this disease that overwhelmingly affects communities around the world, and each person takes a moment to reflect on just how closely HIV impacts their own lives.
But after this day of observance ends, the world returns to its normal state of chaotic hustle and bustle, leaving those who toil daily in the fight against HIV to their work and casting those who live with the disease into the obscurity of consciousness.
On average, the world isn’t cognizant of the quality of life of an HIV positive person. It simply isn’t a common thought that crosses the mind of someone who isn’t affected directly by it. But with 36.7 million people living with HIV worldwide, there should be more concern and compassion displayed, especially for people of color who are disproportionately affected by the disease.
Fortunately, thanks to progressive advances in antiretroviral medications used to treat HIV, the mortality rate of those who are infected has dropped significantly, allowing many to live longer into old age. Aging in itself, however, is often accompanied by complications with health that can lessen one’s quality of life, especially those living with HIV.
I had a chance to speak with long term HIV/AIDS survivor Marlena Richardson about her experience as she ages with the disease, and her perspective on access to treatment is eye opening.
“While living in the rural South there is only one doctor available in my area and he is only available Monday thru Wednesday,” Marlena explains. “I am fortunate to have reliable transportation because without it my health would be in jeopardy. On a scale of 1-10 I give [the quality of my treatment] a 5. If I choose to go to another doctor for HIV care, I’d have to travel an hour and a half to get there and pay for parking.”
As Marlena has advanced in age, she has experienced several health complications including weight gain, neuropathy in her legs, feet and hands, anxiety and memory loss. To further explain the impact on living with HIV while aging, Dr. Roger Bedimo, associate professor at UT Southwestern, lends his expertise on the conditions that affect African-Americans specifically.
“Older adults with HIV have an average of three other health conditions, which is a higher number of multiple medical conditions than adults of the same age without HIV,” Dr. Bedimo states. “People with HIV may be more susceptible to conditions like heart disease, diabetes, cancer, osteoporosis, liver and kidney failure, visceral adipose tissue (lipodystrophy) and depression, and as a consequence their health care utilization significantly increases.”
According to figures from the Centers for Disease Control and Prevention, “the average annual cost of care for an HIV-infected patient is about $20,000 and the estimated lifetime HIV treatment cost is about $380,000.”
“The lion share of this cost goes to medications, not just antiretroviral therapy, but medications to manage the many chronic complications we discussed earlier,” explains Dr. Bedimo. “A very small portion goes to provider compensations and healthcare facility fees. The portions covered by insurance companies vary so much that I think it would be misleading to venture an estimate.”
Due to the high cost of treatment associated with HIV and its complications, many low-income African-Americans who are living with the disease find themselves unable to access affordable healthcare regularly. Ronald Johnson, director of advocacy and policy at AIDS United, lends his opinion on how he believes the U.S. Government can improve in its support of the graying HIV population.
“I think that all three levels of government, local, state and federal, can do a better job at increasing access to and retention in affordable care and treatment for older adults living with HIV,” Johnson States. “This includes increased oversight of private health insurance plans that are provided through the Affordable Care Act and maintaining the benefits provided under Medicaid and Medicare. I think the federal government also should increase its support of research on the various aspects of HIV and aging, including impact of HIV infection on non-AIDS health conditions and on the aging process.”
There is a lot to consider when tending to the needs of the aging HIV+ population, and as the number of diagnoses increase yearly, it’s going to take each of us to raise our voices in support of this community, especially on the brink of a new presidential administration.
“I feel we will be forgotten not only as older people, but as people living with a chronic disease who have taken HIV medication for so long without science telling us what the future holds for us as far as long-term effects of the medications are concerned,” Marlena states.
This sentiment is one that is felt across the entire graying HIV+ population. We must advocate for those who feel they don’t have a voice strong enough to speak up for what they need, beyond established days of observance. Let’s work together to ensure our brothers and sisters aren’t silenced or pushed into the shadows when they need our life long support most.
Glamazon Tyomi is a freelance writer, model and sex educator with a deeply rooted passion for spreading the message of sex positivity and encouraging the masses to embrace their sexuality. Her website, www.glamerotica101.com, reaches internationally as a source for advice and information for the sexually active.curious. Follow her on Twitter at @glamazontyomi.