To Cure or Not to Cure?

29 May

The Summer BABES Talking newsletter is thoughts from BABES members about what it would look and feel like to them if there was a cure for HIV!

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Here is Eldonna’s thoughts on what a cure would look and feel like to her:

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.

To read the full Summer Newsletter and check out our calendar of events click here!

 

 

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