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Time For A Cure?

More Musings From Paul Kawata
Please fill out the following survey monkey by October 8th http://www.surveymonkey.com/s/HIVpriorities

At this year’s International AIDS Conference, a doctor from Australia gave a presentation on Finding A Cure. The C word that we dare not speak about. In many ways, a cure is the holy grail for our epidemic. We don’t talk about it, but we all hope one is possible.

The AIDS Policy Project (http://www.aidspolicyproject.org) is leading the charge to find a cure. Please read their simple fact sheet on AIDS cure research at http://www.aidspolicyproject.org/documents/Factsheet.pdf

When we discuss finding a cure, there are several issues to understand:

• We don’t a viable cure right now; however, we have cured one person living with AIDS
• Its going to take science that is currently not discovered to figure out the solution
• Its going to take a substantial financial investment
• Preventive vaccines will do nothing for people already living with the virus
• We cannot treat our way out of this epidemic
  

According to the AIDS Policy Project, we spend around 3% of the National Institutes of Health (NIH) AIDS research budget looking for a cure. In 2009, National Institute for Allergy and Infectious Diseases (NIAID) spend around $40 million on AIDS cure research. The 2009 NIAID AIDS budget was around $1.5 billion. Thus, NIAID spent around 3% of its annual budget to find a cure for AIDS.

What is the right amount of money to spend? How do we balance that expense against funding for other HIV/AIDS challenges? One solution is to have more money appropriated for HIV/AIDS. The real option is more difficult. Finding new money in this economy feels almost impossible. Even if we were to get more Congressional funds for HIV/AIDS, would or should we spend it finding a cure?

In a world with limited resources, what are the priorities?

Tough conversations about money follows tough conversations about priorities. Although we don’t determine the priorities, we do have input. How would you prioritize the following issues? We need more money for...

• AIDS Drug Assistance Program (ADAP)
• Biomedical research
• Finding a cure
• Global Fund
• Global prevention initiatives
• Global treatment initiatives
• Housing/HOPWA
• National HIV/AIDS Strategy
• National HIV/AIDS media campaign
• Microbicides
• Medical infrastructure in underserved communities
• PrEP
• Targeted HIV prevention programs focused on drug users
• Targeted HIV prevention programs focused on gay men
• Targeted HIV prevention programs focused on trans community
• Targeted HIV prevention programs focused on women, especially Black Women and Latinas
• Test and Treat
• Vaccines
  

Help NMAC understand “community priorities”, please fill out the following survey monkey by October 8th http://www.surveymonkey.com/s/HIVpriorities Let us know your priorities, we will publish the results.

Having tough conversations as a movement is important. If we are going to build a political infrastructure strong enough to move Congress, we have to learn how to have the tough conversations or we will never be able to talk to elected officials.

No Child Born With HIV

We Are Almost @ 4000 Hits, Please Share

Gratitude

Gratitude is the heart’s memory. Thank you for making so many memories for me. Your support of this year’s United States Conference on AIDS (USCA) during these difficult financial times is unprecedented. As a staff member told me, “Our constituents own USCA, we simply manage it for them.”

My Facebook page has been inundated with photos and kind words ( http://www.facebook.com/pkawata)

Gina Quattrochi of Bailey House commented

Congrats on USCA 2010 - you and your staff and all the volunteers did a great job! It was seamless!!! Thanks for your work. Did you know they gave me the Presidential suite cause they were out of reg. rooms? Who's Queen now?? LoL. oxo Ginq

From Tanya Leto: Thank you so much for allowing me to be able to come to this event for the first time! You Rocked!!! You should come to Key West and See the rest of us!

Paul A Kawata: Thank you so much for your kind words. They mean the world to me!

Tanya Leto: No...I speak from the heart and Although I'm still here I walked down pass where check in was and I still got goose bumps. I got a recharged this time. I can't wait to go back home in a week and share what I have learned, felt and seen this pass week. So I leave these words of many blessings!

Mark King shared his video blog http://tinyurl.com/375oul4 on HIV Stigma (and my fantasy husband Jack) at USCA @ My Fabulous Disease

This Year’s Videos

Its Your Move
Please help us make this video go viral. Go to http://www.youtube.com/watch?v=qeC5prY1PhU&feature=recentf click on Share and sent it to the universe. Make this video a “favorite” and/or leave a comment. Embed this video on your agency’s web page. We need to keep HIV in the news! In the first 24 hours, we got 1300 hits!

USCA Opening Video “What Have You Done To Make Yourself Proud”

Thank you NMAC staff for creating the opening USCA video http://tinyurl.com/36z4j3p Feel free to steal it. Use your agency’s logo, programs, staff and volunteers. Its great for Walks, Annual Dinners, etc.

Topsy Foundation Video
http://www.youtube.com/user/thetopsyfoundation?feature=autoshare

We shared this video at the ADAP plenary. It shows the value of HIV medications.

Thanks to sponsorship by Gilead, this year’s conference bag was very special. They were made by low-income women in Chennai, India as part of a novel approach to providing sustainable income and HIV education. They make a wonderful gift https://www.pibags.org/index.php/contacts NMAC gets NO commission from any sales, we just think this is a cool project to support.

We got our USCA $25,000 challenge grant from Gilead! Join us on World AIDS Day 2010 for special Congressional Briefing that NMAC’s Women Of Color Program is co-hosting with Positive Women’s Network and National Women and AIDS Collective. The briefing will focus on the Impact of HIV/AIDS on Women. The funds will be used to bring speakers from these organizations to DC, including women living with HIV/AIDS.

Next Steps
The conference is over, but the fight is just beginning.

• Committed To Saving ADAP
• Interested In Providing Input To NHAS
• Willing To Build City and State Policy Networks

Don’t just talk about saving ADAP, do something. Keep up on the number of Americans on ADAP waiting lists at the National Alliance of State and Territorial AIDS Director http://www.NASTAD.org Turn to Ann Lefert (alefert@nastad.org) for the latest information.

The only way we are going to control the costs associated with HIV/AIDS is to reduce the number of new infections. Stay in touch with Jona Mermin (jhm7@cdc.gov) from the CDC.

Keep up with the NHAS at Coalition For National HIV/AIDS Strategy http://nationalaidsstrategy.org Send comments to Ron Valdiserri (ron.valdiserri@hhs.gov) or Jeff Crowley (jcrowley@who.eop.gov).

Finally, join your local HIV/AIDS policy network. If you don’t have one, then its time to build one. Some of the best community organizers I know are David Munar (DMunar@AIDSChicago.org), Julie Davids (jdavids@CHAMPNetwork.org) and Dazon Dixon Diallo (ddiallo@sisterlove.org) Email them to get involved.

I am always in your corner. Email me at pkawata@nmac.org

I’ve learned that its the relationships that keep me going. USCA gives me that moment to reconnect. Its kinda like a big family reunion. Some family members you love, some you could do without, but it is the process of coming together that unites the family. It is the process of all of us coming together to tell our stories and to learn from each other that helps to build a stronger movement. Thank you for everything that you do to fight HIV/AIDS.

HIV: It's Your Move - 2010 U.S. Conference on AIDS - Please Share

What Have You Done Today?

My Editorial In Tomorrow's Orlando Sentinel

My Word: Listen to stories of AIDS victims

(This was not the title I submitted)

http://tinyurl.com/3yb2vdh

By Paul Kawata

September 10, 2010

Almost 30 years after the Centers for Disease Control first identified the acquired immunodeficiency syndrome ( AIDS) and its cause, the human immunodeficiency virus (HIV), the story of AIDS has largely devolved into one of sterile numbers and cold statistics.

About 1.1 million Americans are living with HIV. More than 56,000 people are infected each year in the United States, and more than 575,000 Americans have lost their lives since the onset of the epidemic.

But while these statistics are horrifying and should never be minimized, the real story of HIV/AIDS in this country has largely been forgotten — that of the individual's struggle against this terrible disease.

In this time of political upheaval, economic hardship and pop-culture supremacy, this personal story, told by those of us on the front lines of the war against AIDS, is critical if we are to refocus our country's attention, and re-engage this disease, which continues to ravage our nation's most-vulnerable populations.

Advances in treatment options, as well as natural limitations on our nation's collective attention span, have contributed to a general decline in the public's sense of urgency when it comes to HIV/AIDS.

But while the epidemic has largely fallen off America's radar screen, a cure continues to elude medical researchers, and infection rates remain alarmingly high. Those of us in the movement are often left wondering what can be done to make people listen.

This is precisely why thousands of HIV/AIDS advocates and activists are gathering in Orlando next week for the United States Conference on AIDS — to share their stories and to help build a stronger movement.

While some people might be reached through statistics alone, my experience has shown me that they are more likely to be moved by stories of how AIDS has affected someone they know and love. And that's the real value of the conference. It provides community and faith-based organizations, as well as those loosely aligned with the movement, the tools they need to be heard.

In this sense, it is particularly fitting that this year's conference will be in Orlando, as this city's immense economic and ethnic diversity mirrors those communities that have been hit hardest by the HIV/AIDS epidemic.

And while there are still plenty of other statistics to be shared — someone is infected with HIV every nine-and-a-half minutes; one in five people living with HIV are unaware of their status — I hope that we as a nation are able to look beyond them, and see the individual struggling to save his or her life and that of a loved one.

Paul Kawata is executive director of the National Minority AIDS Council in Washington, D.C.

Will You Be In My Video? We're Down to the Wire!

We will film “Call-Out from USCA” over the course of the conference. I need 150 friends to join me. I promise, it will be lots of fun! In fact, you may get to dance with me, Paul Kawata!

Please email us at zuzelin@gmail.com to sign up, NO LATER THAN FRIDAY MORNING, SEPT 10th. Please include: Your full name and T-shirt size. We are asking for advance notice so that we can send you more details on the time, location and rehearsal information. All of this will happen during USCA in Orlando. At least you get a free T-shirt.

What have you done today to make you feel proud?

See What Happens When You Don't Get HIV Meds