Cure Activism 101

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Destination: Cure

First Steps
You’d like to get involved in cure activism—where do you start?
by Jeannie Wraight

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If you’d like to help in the fight to find a cure for HIV but aren’t sure how to go about it, this month’s edition of Destination: Cure is dedicated to you. Together we can help end HIV through education, dedication, and action.

HIV cure activism and advocacy is relatively new. Presently most cure activists have long histories in AIDS treatment activism. But whether you have years of experience or would simply like to become involved, there are ways for all of us to help in the fight for an HIV cure by becoming involved in advocating for cure research, cure funding, or cure legislation and policy.

Unfortunately there is no road map to cure activism/advocacy. As you learn and become involved, the more opportunities to participate and take action will present themselves. But where to start?

Advocacy at your fingertips
Here are some resources that can help you become familiar with various aspects of the search for a cure. Also listed below are some ideas of actions you can take right now.

Project Inform: Project Inform’s “HIV Cure Advocacy” section maintains numerous articles on HIV cure research, advocacy, and clinical trials. Log on to: www.projectinform.org/category/cure-advocacy.

TAG: Treatment Action Group’s “Cure-Related Research Resources” provides links to cure related publications, meetings, conferences and other resources. Visit: www.treatmentactiongroup.org/cure.

NATAP: Search “HIV cure” in the National AIDS Treatment Advocacy Project’s (NATAP) site search box for tons of valuable and informative articles. Log on to: www.natap.org.

IAS: Learn about the global scientific agenda with the International AIDS Society’s “IAS Towards an HIV Cure” project. Visit: http://bit.ly/15TOeqr.

First steps you can take
Here are some simple things you can do right now to help advance us towards a cure.

AIDS Policy Project: Join the AIDS Policy Project in fighting for a cure. Sign up to receive updates on reports, events, and ways to participate. Its report, “AIDS Cure Research for Everyone,” is an excellent beginner’s guide to understanding some of the issues around HIV cure funding. Find it here: http://bit.ly/1ee9wJv. To join, log on to: www.aidspolicyproject.org/join_us.

AIDS Cure Day: The AIDS Policy Project has organized the first AIDS Cure Day which will take place on Saturday, October 5, 2013. You can help make this day a success and an annual event by participating and supporting this effort. The AIDS Policy Project has scheduled teach-ins and will help you to organize your own event. Use this day to tell the world we need a cure. Mark the day by participating in scheduled events or organize one of your own. Share information on Facebook and other social media, grab a few friends and talk about the cure, have a discussion online or find another way to commemorate the day. Together we can make this a day the world’s attention will be on the need and struggle for a cure for HIV. For more information: www.aidspolicyproject.org/aids_cure_day.

Regulations.gov: Regulations.gov is a Web site where you can give your opinion on the development of federal regulations and other related issues. Type “HIV Cure” into the search engine and it will give you a list of issues open for public comment. This is a great opportunity to tell the FDA or other governmental agencies your thoughts or bring up concerns you may have. Check back continuously to view new public comment options. Visit: www.regulations.gov.

Researchmatch.org: Clinical trial participation is vital in cure studies. Researchmatch.org is a Web site that matches people with studies they can participate in. Signing up is quick and simple. If an HIV cure study comes up that you may be right for, they will contact you. This could mean answering some questions or testing a new drug (if you, your doctor, and the study coordinator agree the study is a good match). You may have some unique qualification that researchers need. Signing up does not mean that you are automatically agreeing to participate in any clinical trial or study. Log on to: www.Researchmatch.org.

Literacy works!
Early drug development: Drugs in early stage development made by small biotech companies are often lost in the pipeline due to a lack of funding. Research these drugs, share information about them, and advocate for funding for clinical trials for these potential therapies. Novel drugs not financially supported by Big Pharma are much less likely to make it through clinical development but some of these drugs attack HIV in unique and powerful ways and may be potential functional cures. If you’re interested in treatment activism, consider focusing your efforts on preclinical/Phase I/early Phase II therapies. Specific drugs to support will be mentioned in future columns.

Write your Congressperson: E-mail or call your Congressional Representative and tell them to support efforts for a higher level of HIV cure funding. You can search for new bills for cure research at: http://thomas.loc.gov/home/thomas.php. To find contact information for your representative: http://www.house.gov/representatives/.

Keep an eye on this column for more information, vital resources, events, and engaging discussions.

Jeannie Wraight is the editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in the Bronx, New York.