Today is World AIDS Day. The 22nd annual remembrance of its kind, this Day is meant to galvanize fundraising for, awareness of, and empathy towards the issue of HIV/AIDS.
This year, I want to offer a brief biology lesson.
Full disclosure: I do not have HIV. I do have dozens of dear friends living with HIV, who span three continents and several cultures. Many of them have said to me at some point, on or around World AIDS Days past, “But everyday is World AIDS Day!”
Some say it with heavy cynicism, frustrated that their government only pays attention to their concerns one token day per year, treating them as a novelty, asking them to share their stories for a ceremony and then never creating proper legislation to improve their lives. Others say it with immense optimism, sharing their hope that solidarity and increased awareness will overcome the stigma related to the disease.
Everyday is indeed “AIDS Day” for the 64% of people in need who still have no access to lifesaving HIV treatment. Tragically, there are 14.6 million people who still face a death sentence, in a world where AIDS has become a treatable disease.
Most of my friends living with HIV fall into the remaining 36% of people who have access to treatment, and for whom everyday is undeniably “HIV Day.” But everyday is not necessarily “AIDS Day.”
I want make the biological clarification because in mass media the terms ‘HIV’ and ‘AIDS’ are quite regularly mixed up and misused, slashed together when they should be separate, or vice versa. If we are to “overcome AIDS”, the meaningful participation of all people -not just public health professionals and activists – is absolutely crucial. And so I make the distinction that:
- HIV is a virus that kills the immune system, T-cell by T-cell. Over 33 million people are living with HIV, and we do not want “an HIV-free world” because that implies we would like them all to die.
- AIDS is a disease of the immune system, when only 200 or fewer T-cells are left, and any small infection could literally kill you. It is inaccurate to say that someone is “infected with AIDS” – HIV is what infects. It is also false to say that someone living with HIV “has AIDS”, unless they are in this final stage of HIV infection.
I clarify not to be paternalistic, but rather because the media messaging around HIV/AIDS today is diverse – provoking emotions of guilt, fear, hope; requesting your donations and awareness; targeted to different populations. Were I not engaged in the pandemic professionally, I can see that I would have little incentive to be involved when there is no clear bigger picture of which I can be a part.
So today I want to remind you that you absolutely can make a difference, and I encourage you to think within the three overarching goals of the AIDS movement: (1) an AIDS-free world, (2) no new HIV infections, and (3) dignity and rights for all people living with HIV (whether or not they have AIDS).
Now, each goal contains incredible complexities, factors still unknown, and debate over best practices towards achievement. But after 22 years at it, there are some very concrete and agreed-upon actions you can take to make an impact:
1. Increase the amount of people on treatment. This requires money. You can do this with political advocacy by demanding that Obama follow through on his $50 billion AIDS funding promise. More immediately you can do this with direct support to a grassroots organization like Keep a Child Alive. Just text BUYLIFE to 90999 to make an automatic donation. Try it!
2. Protect yourself and promote prevention. If you do not have HIV, or are unsure, get tested every six months. Always use condoms, communicate with your partner, and if you’re also a drug user, or have loved ones using, don’t allow sharing of syringes. Additionally, it is hoped that by 2015 there will no longer be a single baby born with HIV, thanks to prevention of mother-to-child transmission programs.
3. Reject stigma and discrimination. Living with HIV may be a miracle, but it is not desirable: it means diligently taking medications and managing painful or uncomfortable side effects; harboring worry and anxiety of social judgments cast upon one’s positive status; and for some, enduring the inescapable stress and pressure born from having to keep one’s status a complete secret, even from loved ones. You should treat someone with HIV as you would treat anyone else. Don’t cast a moral judgment and don’t carry unfounded fears of infection – and when others do, speak up and correct them. (My most recent role models in this arena are the heroic staff of Rumah Cemara, with whom I shared countless, unforgettable adventures.)
Today, “World HIV/AIDS Day”, as I am going to rename it, leaves me with a bittersweet feeling: Bitter to know that as I type, I have still not done enough: almost 15 million people still lack access to treatment, and millions more bear the pain of both the physical and emotional burdens every day. But it feels so sweet to know that incredible progress has been made over the past 22 years, and that we now live in a world where someone like you or me can be a part of that progress in a measurable, immediate way.
To my readers: On World HIV/AIDS Day – today, but also tomorrow and the next days – I thank you for taking clear action to end AIDS, to prevent new infections, and to always respect human life.
To my friends living with HIV, those here and those already passed on: thank you for teaching me to be joyful about life no matter the struggle.