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Author Topic: CALL TO EASY ACTION - US-BASED FORUM MEMBERS ONLY (sorry)  (Read 2442 times)

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Offline emeraldize

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« on: December 08, 2010, 04:12:04 PM »

As you may already know The National Institute of Allergy and Infectious Diseases (NIAID) has developed a series of blog posts on the AIDS.gov website related to planning for the future of NIAID’s HIV/AIDS clinical trial networks. NIAID is seeking input from the broader research and HIV/AIDS communities on specific aspects of the restructuring of NIAID’s research networks. They are specifically seeking comments about the treatment and prevention research priorities that should be addressed during the coming years.

As members of HANC Legacy’s Women and HIV Research Collaborative we have noticed that very few comments that have been submitted to date on any of the NIAID blogs have placed an emphasis on the urgent need for ongoing domestic prevention and treatment research that focuses on HIV/AIDS and women. We are therefore issuing this call to action.


•   Go to http://bit.ly/NIAID_Blogs and select one or more of the NIAID blogs.

•   Add your comments (or see the sample below that you may use and/or edit) about the need for a renewed focus on HIV research with women in the United States. To help in that process we have provided a sample comment post that includes some talking points that you can cut and paste into a blog posting. Please write your own response, or simply submit some or all of the points provided below.


•   Forward this email or the link to this post to everyone you know who would be willing to make sure that HIV research for Women in the United States remains a priority.


Thank you for using a minute of your time to take this action to ensure women are part of the future of HIV/AIDS research in the United States.

WHRC Members

Please Modify These Comments or Create Your Own Comments
In Support of HIV Research and Women]

I am concerned about the health of women in the United States, particularly as it has been disproportionately impacted by HIV. I wish to support the following areas discussed and prioritized by the HANC Legacy Project during a first-time-ever Consultation on HIV Research and Women on June 11th and 12th, 2010. Their review reflects key concerns such as sensitivity to culture, quality of life, and the changing needs of women across the lifespan.

I respectfully ask that NIAID includes the following priorities related to HIV prevention and treatment for United States’ women:
Epidemiological data must continue to drive research priorities. Awareness of the impact that HIV has had on women in the United States has been heightened through the use of epidemiological data from the Centers for Disease Control and Prevention. The CDC guidance mandates prioritizing HIV prevention efforts for those populations who are most burdened by infection.

HIV treatment research for women continues to be an urgent priority. Prior to the availability of HIV treatment women were 10% less likely than men to die from AIDS defined illnesses. In today’s HIV treatment era, however, women are 20% more likely than men to die from AIDS. While research has answered key questions and has provided specific strategies and treatments to reduce mother-to-child transmission, research must now seek to gain greater insight into gender disparities in treatment successes.

There is a critical need for research that seeks to understand the relationship between women’s reproductive health, gender and economic inequalities and HIV prevention and treatment. United States’ health policies and programs that are designed to reduce the risk of HIV and other sexually-transmitted infections must be improved to explicitly address overall economic disempowerment among women, as well as disparities in poverty among ethnic populations. Research is needed that will help provide the data necessary to make those improvements.

There is a critical need for increased involvement of women in the design and implementation of research. It is understood that HIV prevention and treatment research must include growing numbers of adolescent and adult women. Low retention rates for women in HIV research studies are believed to be influenced by study designs intended for men, but were later altered to accommodate women.

There is a critical need for research involving men who report primarily having sex with women (MSW). The majority of HIV positive women report being infected through heterosexual intercourse or through intravenous drug use. Few studies have focused on the prevention and linkage to healthcare needs of men who primarily identify as having sex with women.

There is a critical need for research in genetics, pathogenesis, and pharmacology of HIV positive and negative women. Understanding women’s physiologic risk; resilience; genetics; drug efficacy; dosing requirements and variables such as pharmacogenomics,  is key to enabling adherence, improvements in health and quality of life, and the specific, gender-based care women need and deserve.

Offline leatherman

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« Reply #1 on: December 08, 2010, 05:18:01 PM »
Vastly different from my experience in OH for the last 20 years, HIV in SC has a (rising) rate of 73% of new infections as African Americans, and nearly a 1/3 of those cases are women (infected by MSW), so I gladly just posted a comment onto the "Restructuring NIAID's HIV/AIDS Clinical Trials Networks" prefacing your suggested comments with:

"I too greatly appreciate this chance to add input into these discussions. Although I am an HIV positive male (living with AIDS for the last 2 decades), I am also concerned about the health of women in the United States, particularly as it has been disproportionately impacted by HIV. I have seen in my own state of South Carolina, the rising disproportionate number of women (especially African-American women) becoming infected and dealing with HIV." ... followed by the rest of your suggested post.

Now, let's hope it gets approved and posted.  ;)

Thank you for bringing this to my/our attention. I have signed up for emails to blog.aids.gov and have really enjoyed the wealth of info from that site and with continual updates on the activities in America concerning dealing with the HIV epidemic.
leatherman (aka mIkIE)

So we put our hands up like the ceiling can’t hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015

Offline emeraldize

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« Reply #2 on: December 08, 2010, 08:30:14 PM »
THank you SO MUCH, Leatherman!

Offline leatherman

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  • Google and HIV meds are Your Friends
« Reply #3 on: December 08, 2010, 09:32:41 PM »
THank you SO MUCH, Leatherman!
woohoo! It got approved and posted.

and as I said thank you for bringing this to my attention. Your subject fits right in with the change in my 20-yr mindset that I've been going through becoming an activist here in SC. In a state where HIV isn't just a "gay issue" anymore (I as a white gay male am in the minority), I've been learning how those most affected are poor, or black, or more and more frequently women (58% thru heterosexual contact).

from the Feb 2010 SC DHEC doc "HIV/AIDS among African-American women in South Carolina"
• In South Carolina, over 4,500 women are estimated to be living with HIV/AIDS.
• More than eight out of 10 S.C. women with HIV are African-American.
• African-American women have a HIV/AIDS case rate 12 times greater than that of white women in South Carolina.
• In 2007, African-American women comprised 30 percent of persons who died from AIDS in S.C.
• African-American women represent 23 percent of new cases diagnosed in 2008.
• This impacts our children. More than eight of every 10 babies or children who are infected with HIV
from their mothers are African-American.

These days with the increasing amount of women infected with HIV, more research is needed to not only understand how the meds work for women (vs men in many of the drug trials) or how HIV actually affects women vs men; but also how to better outreach to women to teach prevention/education and to get those women infected tested and into treatment.

edited to add: how interesting to see on FB today that aidsmap.com is offering a link to the New edition of NAM's HIV & women booklet. "In collaboration with Positively UK, this booklet now has more essential information for women living with HIV. It has also been translated into Dutch, French, German, Norwegian, Russian and Spanish."

« Last Edit: December 09, 2010, 09:28:55 AM by leatherman »
leatherman (aka mIkIE)

So we put our hands up like the ceiling can’t hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015

Offline emeraldize

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  • Posts: 3,396
« Reply #4 on: December 09, 2010, 09:51:49 AM »
The change in your 20-year mindset is quite becoming!

Thanks for the blog support. Congrats on the post hitting!!


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