For about a year, there has been much discussion about the possibility of a cure for HIV. Visit POZ’s website to learn more about the many different aspects to this conversation.
For BABES Network-YWCA’s summer newsletter, we asked the question: What would it be like to be cured of HIV?
Some people in our community have been living with HIV for 6 months and some have been HIV+ for 30 years. Each person’s life has been impacted by their HIV diagnosis in different ways and have done their best to live healthy and engaged lives. Being cured of HIV is not something BABES Network has often thought about – but now that we could possibly have a cure in 10 years, we think it’s important to consider what that would mean for us as individuals and for our communities.
Different people in the BABES community wrote in and shared their thoughts on this question. Here are two of their stories.
I was asked recently what my life would be like without HIV, if we had a cure. I was shocked to realize (and am probably the only person in the world with HIV) that I had never even thought about that possibility in spite of being well informed on the medical advances in that field.
When I stopped to think about it, the first thing that crossed my mind was I would no longer have to watch those I care about and love die from issue’s related to HIV/AIDS. That would be a day to celebrate. It would also be a sad day as most of the world would not be able to afford it, even if it were as cheap as an aspirin tablet. Much as it is today with our treatment options. But, nonetheless it would be a great day for humanity.
On the personal side, it would make no difference to me at all. I would not rush out to get cured, even if I could have it paid for by someone else, again much like today. But the possibility of a cure raises questions I had never even considered, questions of self-worth and the value of my life to the community if I no longer had some of the conditions that have made me somewhat unique, my Hemophilia (bleeding disorder), AIDS and Hepatitis C infection. These are difficult dilemmas I’m sure I will be wrestling with for many years to come.
Ever since Timothy Ray Brown (the Berlin patient, 2007) was cured of HIV there have been quiet conversations among family and friends about the possibility of a cure. But that’s all it was, just talk. Today, because of Mr. Brown’s treatment we know so much more, and a cure is becoming nearly a reality. So what would a “CURE” mean to you?
In my life, for me, that idea creates more questions than answers. Would everyone still living get the cure? Would we be required to get the cure? Would AIDS service organizations just close up shop or would they be phased out over time? Would there still be case management and/or clinics like Madison? Would those of us who have AIDS and are disabled be required to return to work after the cure? Would HIV/AIDS funding be cut from the national budgets? Would prevention still be a priority? Would there be support groups for people who are cured and trying to find balance in their new reality? And most importantly, how would I spend all that time that is being taken up with doctor’s appointments and self-advocacy?
I was diagnosed on July 1st of 1985 just seven days after my 21st birthday. My whole adult life has included living with HIV. Quite frankly, I did not expect to live this long and, I’m not sure that I know any other way to live. Please don’t get me wrong, I want a cure to be available. No one should have to live with our reality. But I’m also afraid of the unknown. I’m pretty adept at advocating for myself and use a minimum of services but if I run into trouble I have that safety-net of case management. I just survived breast cancer, am turning fifty and I’m entering yet another phase of my life. If the cure was available to everybody in ten years when I’m turning sixty would I go for it? I honestly don’t know but I hope so.
But here is something I do know! Along with continued self-care, medical care and self-advocating, we as HIV + people need to start having earnest conversations on policy regarding the “CURE”. As always, we need to be proactive. We need to look at the science and both the pro’s (and there will be many) and the con’s and create smart policy. Otherwise we may be just as overwhelmed as the day when we were first diagnosed.
Visit the BABES Network-YWCA website to learn more about our program and to get in touch with a BABES Peer Advocate, email us or give us a call at 206.720.5566 or toll-free at 888.292.1912. Email us to start receiving newsletters and/or e-newsletters.