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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!

 

 

Community Q and A on HIV Cures!

1 Apr

Partner in Strength

March 10th is National Women and Girls HIV/AIDS Awareness Day!

28 Feb

Click here to view the BABES March Calendar!

NWGHAAD

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In recognition of National Women & Girls HIV/AIDS Awareness Day, help us get the word out to women about the importance of HIV testing. Prior to March 10th, forward this information to women in your professional and personal circles.  And share it on Facebook, Twitter, Pinterest, Google+ and your websites.

Learn more about National Women & Girls HIV/AIDS Awareness Day and learn about HIV and HIV testing.

TAKE CHARGE of your health! If you’re sexually active now or in the past, ask your health provider for an HIV test. IF you have HIV, there is treatment that can help you stay healthy.

Be INFORMED! Take CHARGE! Protect YOURSELF! Get TESTED!

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HIV Awareness. TAKE ACTION with Thunderclap!
National Women and Girls HIV/AIDS Awareness Day is coming up very soon. To take action, we invite you to sign up for the national HIV Awareness. Take Action! Thunderclap.

Not sure what Thunderclap is? It’s a new online tool that allows National Women and Girls HIV/AIDS Awareness Day supporters (people like you!) to say something together. If enough people support our HIV Awareness. Take Action! Thunderclap, a message will blast out at exactly the same time on March 10, 2014. Signing up is easy; do it today!

1.  Click “Support with Twitter,” “Support with Facebook,” and/or “Support with Tumblr” and get the word out to your followers     and friends to do the same.
2.  Visit www.womenshealth.gov/nwghaad for additional ideas on how you can take action.
3.  On Monday, March 10, 2014, watch as everyone’s messages are shared at 12:00 p.m. EDT.
Your tweet or post could empower someone to get tested or to seek treatment if they are HIV positive. That’s why we need your support. Please forward this message!

Thank you on behalf of Public Health – Seattle & King County, BABES Network-YWCA, and U.S. DHHS Region X Office on Women’s Health and HIV Regional Resource Network Program

Winter 2014 Newsletter

31 Jan

Our the Winter BABES Talking Newsletter Topic is “BABES born with HIV”

christina rockLiving with HIV for almost 30 years, for me it’s literally a lifetime.  I am living a future I never thought I would get the chance to see in a way I would have never thought possible.  I have two kids that keep me busy and a wonderful person to stand with me and support me, and I am the only one among us with HIV……

Medicine and our understanding of HIV has come so far from my childhood dominated by horrible medicines with even worse side effects,  countless doctors appointments and hospitalizations. We haven’t nailed down the cure (that will be able to cure everyone) yet, but we are making leaps and bounds, and surely we are not so far removed from a future free of HIV.  I personally have gone from an all time high of 39 pills a day, to just one.

In fact, an outsider unaware of my positive status, looking at my day to day activities wouldn’t know that I have HIV at all, unless they specifically looked up what that one little multivitamin sized pill was exactly for.  That is not to say that HIV doesn’t impact my life.  It’s just not as visible anymore.

I’ve always been the grandma amongst my friends.  I enjoyed going out and “partying”, but I was always the one to cut our evening short.  My liver already works overtime filtering the meds, anything more than a couple of drinks here and there will certainly guarantee an “elevated liver enzyme” result on my next labs.  Before I met my partner and had kids, I was afraid drinking too much around strangers would put me at risk of lowered inhibitions, not only of “hooking up” without protection, but in many states I could be charged criminally just for exposing someone to HIV.

Now that I’m a mom, I don’t have time to go out and party.  Now I worry about accidental exposure to my kids, even though my viral load is undetectable and transmission risk is therefore exceptionally low, there is always that concern especially going through the “biting phase” of toddler years.  Even though my partner and I use protection,  I always am worried about what his next routine test will say.

Your experience surely varies as we are all unique.  For now I’m so thankful for my overall health, and my family’s. There is always something to worry about; all I can do is take my medicine, try to push the what ifs away, and make dinner.

 

Please check out the Winter Newsletter to find out what events are going on this month and read other stories from some of our BABES that were born with HIV.

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Annual One Day Retreat

Self-Care Retreat for HIV+ Women only!

Saturday, February 22nd

10-4pm

YWCA

Join us for a day of self-care we will have games, yummy lunch provided by ViiV Healthcare, HIV education with Dr. Peter Shalit, goodie bags and more!

Please RSVP to 206-720-5566, we hope you can join us.

You can honor a BABE this World AIDS Day!

1 Dec

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Will you join BABES Network—YWCA and support women like Nee Nee this World AIDS Day?

When Nee Nee was diagnosed with HIV and also AIDS in 1998, she didn’t know where to go for help.  She moved from the hospital, to a nursing home, to her mother’s home – all while trying to maintain a complicated health regimen.

Then in 2003, she found BABES Network.  BABES helped Nee Nee gain control of her disease—she learned the importance of taking her medication every day, making regular doctor appointments and taking care of her mental and physical needs.

Since joining BABES, Nee Nee is often the first one to arrive for weekly support-group and she hasn’t missed a single BABES retreat.  Nee Nee reminds me why BABES exists – so that women living with HIV/AIDS can confide in each other and share their daily struggles and triumphs.

If you already made a gift to support BABES over the holiday – thank you!  If you haven’t, today, in honor of World AIDS Day and women living with HIV/AIDS everywhere, will you make a gift to support BABES Network—YWCA? Make sure and designate BABES Network in the comments box!

Your gift can go even further today, because an anonymous supporter is MATCHING every gift of $100 or more!

Read more stories of bravery, strength and spirit by clicking here!

Thank you for keeping BABES in your thoughts this World AIDS Day and holiday season!

With deepest gratitude,

Nicole Price
Program Manager for BABES

P.S.  Please go to the donate tab to make your gift to BABES and women living with HIV/AIDS today!