Even with improved stats, there’s a long way to go before living with HIV gets easier
I am a 47 year old gay white man who has been living with HIV for nearly 10 years. I have built a professional career in the field of international education, human rights, and performing arts.
Understanding the implications of my HIV status has been a profound learning experience. HIV helped me appreciate the power of vulnerability, my own and of those less privileged.
Experiencing personally how terribly demoralized living with HIV can make one feel, and how disproportionately the disease impacts people of color and homeless youth, I find the reality of HIV in America deeply sobering.
Being connected to a global experience of stigma and marginalization has been a challenge, yet it serves to connect me to a shared reality going beyond national boundaries, ethnic identities, sexual orientation, class, gender, race, and creed.
When I read about how things are getting better for those of us living with HIV, due to treatment advances, I have to ask myself a few questions. As a person living with the disease, do I feel the same about these achievements? Has anyone asked me if it’s better, or are they telling me it’s better because they cannot cope with nuance, or they just want the crisis to be over, finally? Does this help or hurt the HIV community?
I feel it’s uninformed reporting with unintended consequences, making the disease seem less lethal than it is, and selling hope when there are still no cures available. As a person living with HIV, I cannot tell you how many “cures” I have been subject to, and it’s a painful process.
Yes, I am pleased the disease is becoming more manageable for some. SOME. I am amazed by how far treatment has come in the last number of years, but I worry that the root social causes of HIV transmission have still not been addressed.
In my experience, HIV can be found in high concentrations where there are corresponding levels of discrimination, marginalization and poverty. I see these social issues worsening as the treatment for HIV has improved. For HIV to be eradicated, poverty and homelessness must be addressed.
HIV is still a highly stigmatized disease with long term physical, psychological, economic, and social impacts. My disease is still progressing, but more slowly. In addition, we HIV survivors are now aging, and aging quickly. When I turn age 60 my body will be more like that of a 70 year old as compared to my non HIV peers.
The effects of these lifelong HIV regimens are still unknown, since we are the first generation to survive into our golden years. We know the medicines weaken our bones, that the HIV itself make us prone to a host of related cancers, and that depression stemming from social isolation and unprocessed psychological trauma is a huge threat to our well-being and long term survival.
Don’t get me wrong, I am happy for the years I have coming. I plan to use them well. But I realize that I come from a place of privilege and power, but most do not.
For the past 20 years, many in my community passed away so quickly that long term life plans were not the focus. I remember a time when I attended three funerals a week, and it seemed soon I would likely be planning my own.
I am glad these days are gone for me. Yet I know for others, this is still the reality, not just in the U.S., but all over the world. In the U.S, the gay community has moved their attention to issues of marriage equity, a fight I support, but in doing so it has sent a message that HIV is no longer a pressing issue.
After what I lived through, this can be a bitter pill to swallow, especially since people of color and young gay men are testing positive in increasing numbers. HIV is far from cured for them.
The younger generation seems to think that if you get HIV, you can just take one pill a day and there is nothing to worry about. Pharmaceutical ads support this misinformation.
In addition, there are effective prevention methods which can drastically reduce your chance of transmitting or contracting HIV, but these advances have been slow to take center stage, due to the same foot dragging, homophobia, racism, and paternalism we have seen for decades in public health policy.
People living with HIV are still targeted, discriminated against and stigmatized in health care, housing, the workforce, in their faith communities, and by a largely uneducated public and biased political machine.
We have a long way to go before things are truly better. I am excited that with the Affordable Care Act, more people will be able to be tested and treated for HIV reducing the likelihood of transmission.
Viral suppressed individuals are much less likely to spread the disease, and earlier detection will extend life expectancy. Since 40 percent of people currently living with HIV do not know their status, access to care will be a great step forward through testing and medication.
But with funds for care, housing, food, and infrastructure being cut by the government, and donations lessening due to hard economic times and different priorities, what will we do to serve the 40 percent who are positive, newly diagnosed, and in need of services? I have heard little about this capacity issue in the public health arena or in the media.
If living with HIV is going to get better, and easier, it is my belief that it will be through the efforts of those of us living with the disease, doing the tough work of healing our bodies and hearts, and through our allies, and those who know what it is like to survive a plague.
Carlton Rounds is a CareLink navigator for Cascade AIDS Project in Portland. CareLink connects people to medical care who are newly diagnosed with HIV or who have not seen an HIV medical provider in more than six months. It is a bridge to more permanent care. He is also the Executive Director of Volunteer Positive, the first international volunteer service organization for people infected with and affected by HIV.