T’is the (Election) Season

September 13, 2012 in Elections 2012, Policy/Advocacy

Photo of Jessica Terlikowski

by Jessica Terlikowski, AIDS United Director of Regional Organizing

Just 53 days remain until Election Day.

That’s 53 days.

Fifty-three days to help voters understand that everything from HIV prevention to health care to housing to food stamps to LGBT rights to women’s reproductive health and justice is on the line this Election Day.

Fifty-three days to mobilize people who live with and care about HIV/AIDS to get to the polls early and on Election Day.

Fifty-three days to fight against the voter suppression efforts taking place in too many states.

Fifty-three days to bird-dog candidates with questions asking how they will address HIV and the health care crisis in the U.S.

Fifty-three days to light a fire within our community and ensure that every person who lives with, is at risk for, and cares about HIV/AIDS has their voice heard on November 6.

And there are even FEWER days for people to REGISTER to vote, with each state having its own registration deadline – a deadline that is swiftly approaching no matter where we live.

For the last five months, AIDS United has worked to make sure the HIV community has what it needs to get the vote out this election season. We have held webinars and on the ground trainings and strategized with grantees and partner organizations on how to ramp up their involvement in the elections. We collaborated with Florida, North Carolina, South Carolina partners to hold events featuring local and national leaders at the Republican and Democratic conventions to shine a light on what Medicaid expansion means for people living with HIV and how health care access is critical to turning the tide on U.S. HIV epidemic.

Packed rooms at each event listened to esteemed speakers: Dr. Joseph O’Neill, National AIDS Policy during the Bush Administration and President’s Emergency Plan for AIDS Relief (PEPFAR) architect, Jeff Crowley, former director of the White House Office of National AIDS Policy for President Obama and the force behind the development and implementation of the U.S. first National AIDS Strategy, and congressional HIV/AIDS champions Representative Barbara Lee (CA-9)
and Representative Maxine Waters (CA-35). Though they served under the leadership of two different parties, both former AIDS directors agreed that there is much that can and should be agreed upon across the aisle to end HIV in the U.S. and around the world. Both O’Neill and Crowley spoke to the importance of increasing the number of HIV-positive people who can access and stay in care.

Advocates at each event shared how they are using the election as an opportunity to educate voters, candidates, and elected officials about the needs of the HIV/AIDS community. Metro Wellness and Community Centers in Tampa is registering clients. North Carolina AIDS Action Network is asking North Carolinians to pledge to vote.Regional AIDS Interfaith Network is using the AIDS United voter mobilization toolkit to educate voters about the issues at stake. North Carolina Harm Reduction Coalition is training law enforcement and veterans on how to talk with conservative lawmakers about the value of improving sterile syringe access and other harm reduction services. These are just a few examples of grassroots efforts to ensure that people living with and at risk of HIV/AIDS are informed and engaged in the civic process.

AIDS United grantees and partners in Alabama, Georgia, Illinois, Ohio, Pennsylvania, and Virginia are also building and mobilizing their states so that the voices of their HIV/AIDS communities are heard at the polls on November 6.

Over the next 53 days, you can count on AIDS United to continue to move full steam ahead with our efforts to engage, educate, and mobilize. Can we count on you to join us? Email organizing@aidsunited.org to let us know!

Mobilizing in DC for World Hepatitis Day

August 21, 2012 in 2012 International AIDS Conference, Policy/Advocacy, Southern Initiatives, Syringe Access Fund

by Leilani Attilio, Intern
North Carolina Harm Reduction Coalition

On July 28, 2012, North Carolina  Harm Reduction joined other hepatitis activists on the White House lawn to commemorate World Hepatitis Day with a special focus on Hepatitis B Virus (HBV) and the Hepatitis C Virus (HCV).  Hepatitis has reached epidemic proportions around the world, including the United States, but has largely flown under the radar in communities.   Approximately 805,000 to 1.4 million people1 and 3.2 million people2 are infected with HBV and HCV in the United States, respectively. Unfortunately, people who are infected with HCV, which is the leading cause of liver transplants and liver cancer in the United States, may not have any signs or symptoms for decades, making the spread of the disease more pervasive.  In addition, to give a sense to the seriousness of the disease (if the word “cancer” wasn’t enough), deaths due to HCV have surpassed those from HIV/AIDS3.  In an effort to curtail further transmission and deaths, the White House hosted the fifth World Hepatitis Day on August 2 to bring awareness to the threat of the disease across the country.

Featured panelists and speakers at the White House included Congressman Hank Johnson, who spoke about HCV as a person living with the disease; Dr. Howard Koh, the Assistant Secretary for Health for the U.S. Department of Health and Human Services (HHS); and Dr. John Ward, Director of the Viral Hepatitis Program at the CDC.  The gathering was a platform to roll out strategy plans, recommendations, and tools for surveillance.  For example, the CDC unveiled an online risk assessment tool for hepatitis.  The brief questionnaire asks various questions such as year of birth and nativity.  At the end of the questionnaire, the assessment tool generates a printable summary and recommendations to discuss with your health care provider.

The North Carolina Harm Reduction Coalition is working closely with the North Carolina legislature for the state to adopt recommendations supported by numerous professional medical organizations such as American Medical Association, American Public Health Association, and Institute of Medicine.  These recommendations include syringe decriminalization, which would allow us to conduct syringe exchanges in North Carolina without criminal prosecution.  Injection drug use is a risk factor for HCV due to practices such as sharing needles during injection.   The coalition is looking forward to minimizing the risk of disease for all people and collaborating with other organizations t do this.  We hope you will join the fight.  The first step is to raise awareness. Consider this step checked off.

The North Carolina Harm Reduction Coalition is a grantee of AIDS United’s Southern REACH initiative.

References

1. Weinbaum CM, Williams I, Mast EE. Recommendations for identification and public health management of person with chronic hepatitis B virus infection: MMWR 57(RR-8):2;2008.

2. Armstrong GL, Wasley A, Simard EP, McQuillan GM, Kuhnert WL, Alter MJ. The prevalence of hepatitis C virus infection in the United States, 1999 through 2002. Ann Intern Med. May 16 2006;144(10):705-714.

3. Ly KN, Xing J, Klevens RM, Jiles RB, Ward JW, Holmberg SD. The increasing burden of mortality from viral hepatitis in the United States between 1999 and 2007. Ann Intern Med. Feb 21 2012;156(4):271-278.

“I Am Not Alone”

August 10, 2012 in 2012 International AIDS Conference, Access2Care

An interview with

Jae

NOTE: This blog post also appears on the website of The Well Project here. As part of AIDS United’s Access to Care initiative, AIDS United and The Well Project are working together to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C.

“What are some of the barriers to accessing HIV care have you experienced?”

The insurance company assigned an infectious disease specialist (IDS) as soon as I was diagnosed. My husband and I requested that we went to a doctor that wasn’t near our house. At our first appointment, my doctor told us that we had about 2 years to live. I left the office and got a new doctor. It wasn’t necessarily the barrier to access it was the stigma of going to a doctor in my town. We lived in a small town of 17,000. My husband and I went back to our primary care doctor and asked him to follow our case. He monitored our lab work every three months—which was more like six months. When we were diagnosed we didn’t have any symptoms so I didn’t see the need to see him more often. We still drove 80 miles one way to see a doctor.

It wasn’t until I got pregnant with my youngest child that I saw a IDS. I still drove 80 miles one way to see this doctor.

“How have you overcome those barriers?”

After over 10 years of traveling to go to my doctor I looked for specialists in a nearby town. This town was half of the distance and my insurance company agreed to cover this doctor even though they were out of our plan coverage. I talked to my husband and told him that this doctor’s office was attached to other offices and not only to infectious disease, he agreed to go. (I think he was tired of the drive too).

Since we made the move to the new doctor I have been more compliant with my laboratory work and doctor visits. I am not afraid of running into people we know, and if we do there are many other doctors in the building.

“What made you want to start learning more about/taking action in the fight against the HIV epidemic?”

I was not fighting this epidemic; I was surviving it by ignoring that it existed. I would get up every day and live my life. I kept myself busy with my children’s sports activities (I wouldn’t just attend, I coached and became a board member for 10 years), my work, my schooling. Even though I was extremely busy, I felt so alone. I couldn’t talk to anyone about this disease in fear I would alienate myself and my family. I finally needed to reach out and looked online to find others like myself. I just knew there had to be other women I could talk to. I never thought of myself as an activist in the fight against HIV. I was in this for myself, this was self-preservation. I didn’t know there were other people like myself. I needed to connect with others so I didn’t feel so alone. (See Jae’s blog: Hello! I have HIV!!)

“What were you expecting to learn about today that you didn’t know before you came to IAC?”

I really had no expectations from this conference. I really didn’t know what to expect. I was surprised. I met some really strong women that had the courage to stand up and speak openly about HIV. I met Ms. Plus America (Michelle Anderson); she is living and surviving with HIV. She is an inspiration to me. She is making a difference in so many lives and I hope I will be able to make a difference too.

“What did you actually learn from your experiences at IAC?”

I am not alone. I am one of many. We have jobs, kids, and lives. Life doesn’t stop because you are HIV positive. Sometimes it’s nice to know you have a friend that truly understands you.

“How will you apply what you have learned to your day to day life and/or in your community?”

I am going to go back and speak to the youth groups at my son’s high school. I will also be going to contact the local AIDS Organization and attend some of their open forums, to see what they are actually doing for women in our community.

Jae

Hurting or Helping? My Story from IAC

August 8, 2012 in 2012 International AIDS Conference, GENERATIONS

by Dafina Ward, Project Manager, Beauty in Knowing
AIDS Alabama

On July 24,  I had the honor of attending the “AIDS in America” forum at The Washington Post.  Sponsored by the Ford Foundation, the event featured some of the nation’s leading experts and decision-makers in the areas of HIV/AIDS and health.  U.S. Surgeon General Regina Benjamin, Black AIDS Institute CEO Phill Wilson and acclaimed physician Dr. Anthony Fauci were among the speakers.  Also among them was my own CEO, Kathie Hiers, who also serves on President Obama’s Advisory Committee on HIV/AIDS (PACHA).  Following the panel discussions, Secretary of U.S. Department of Health and Human Services, Kathleen Sebelius, spoke on the topics during a one-on-one interview with Jonathan Capehart (one of my favorite MSNBC contributors).  Like I said, this event was a big deal.

With all of the acclaimed speakers and experts on hand, I expected to learn more about the future of AIDS in America, to leave reassured that we are moving in the right direction in addressing health disparities, to gain insight into the reality of an actual “cure”.  And I did gain all of those things—and more.  What did I not expect was to leave questioning the way I do my work.  But at the end of the day, I was left with a sense of guilt and a nagging feeling that maybe well-intentioned prevention workers are a part of the problem in communities at greatest risk.

That probably sounds really crazy.  I mean, how could that be?  We “target” populations at “highest risk” and equip them with the tools that should lead to less “risky” behavior.  But through our characterization of the people we serve as “troubled”, are we in essence part of the problem?  Unbeknownst to us, we sometimes approach our work as though there is something inherently wrong with the people we serve, as though they are “less than” and that they are in need of repair.

I came to this thinking as I reflected on my own experiences.  I facilitate an intervention, Beauty in Knowing, which services African-American women who are enrolled in cosmetology school.  The program provides five sessions addressing HIV/STI prevention, condom negotiation, assertiveness, and a host of other topics relevant to our participants.  Several months ago during class a participant posed an interesting question.  She asked why African-American women were always being discussed as though they were “THE” problem when it comes to HIV. Why weren’t the men they were sleeping with being made accountable through programs such as this?  Are prevention programs trying to say that African-American women are more promiscuous than other women?     Now of course I explained to her that our program was about empowering women.  That the HIV rates in our community reflected a need for targeted interventions that empower African-American women (In Alabama, African-American women are becoming HIV positive at a rate of 9.5 to 1 when compared to Caucasian women).  In that moment I thought that I had adequately reflected upon and responded to her question.  But perhaps not.

Dr. Vignetta Charles of AIDS United was also a speaker at the AIDS in America panel, and a point that she made gave me pause as it took me back to my participant’s barrage of questions months ago.  Dr. Charles made the point that African-American women are not becoming infected at higher rates than other women because they sleep around more or take more risks than others.  It is truly about who these women are sleeping with.  An African-American woman is more likely to become HIV positive during one unprotected sexual encounter with an African-American man, than a Caucasian woman who does the same with a Caucasian man.   Of course I haven’t done formal research to support that theory, but it makes complete sense.

In our program women often report being in sexual relationships with men in their communities who have multiple female partners.  They also express being uncomfortable discussing condom use with their partners—let alone making it a requirement.  Imagine if these women felt empowered to establish such a requirement with their partners.  Imagine if these women felt empowered to remove themselves from relationships where they know their partner is sleeping with other women.  Imagine these women being made to feel that they are part of the solution in the fight to end HIV/AIDS and not the problem.

So what I will take away from the International AIDS Conference is the necessity of true community engagement in fighting the spread of HIV in my community.  We often talk of community participatory research and program development.  But what if we truly empowered the communities we serve to see themselves as the key to stopping the virus—rather than problems that we desire to “fix”.   We can end the spread of HIV and turn the tide in our communities, but we must truly do it together.

Dafina works on AIDS Alabama’s “Beauty in Knowing” project as part of AIDS United’s GENERATIONS initiative supported by Johnson & Johnson.

Take Your Meds and Live Your Life!

in 2012 International AIDS Conference, AIDS at 30

Maria

NOTE: This blog post also appears on the website of The Well Project here. As part of AIDS United’s Access to Care initiative, AIDS United and The Well Project are working together to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C.

Why aren’t we being adherent and why of the 1.1 million Americans living with HIV, are only 25 percent virally suppressed?

I guess I have to start with myself..I found out I was HIV positive as a young 18 year old in 1991..I could say I was not on ARVs because the only thing that was available was AZT..but the reality is that I highly doubt in those times–and with so little knowledge about HIV medications and all the side effects that I was hearing about–that I would have started treatment.

As a Latino woman living in Miami, I have seen people that have many problems adhering to their treatment, getting tested, or because they do not have access to care because of lack of insurance or the STIGMA of having HIV. They would rather not even be seen in the clinic because of fear that someone will recognize them. This is very sad to me in many ways. What usually happens is the person gets very ill or they have their immune system broken down (like what happened to me) when I dropped to 39 Tcells after 10 years without any HIV medicine. As I see it, at least I had the option to start treatment back then and I was not put in the situation that some are in now… NO FUNDS! NO MEDICATIONS! WAITING LISTS!

I believe the most effective way to get people to adhere to their treatment or to get tested is through education, to be active in our communities and get the conversation going. We can’t just sit back and take our meds while our brothers and sisters that are starting this journey lack the resources or information on how to live a long and healthy life with this virus. We have to go to schools and universities, jails…anywhere where it’s needed…at least that is what I do and will continue to do until my last breath. People have to realize that there is a serious crisis going on… HIV/AIDS continues to spread and people are still dying. Every 9 1/2 minutes someone here in the USA gets infected and 1 out of 5 people have HIV and don’t know it. Or simply people are NOT respecting this virus..they think it’s as simple as taking one pill and they will be fine.

It is horrific to me that  only 25% are virally suppressed! Why? Well many people will have different answers!

some will say as I do…

  • No access to treatment
  • Lack of information and sometimes no good communication with their HIV specialist
  • Lack of transportation to their doctor’s office
  • The Stigma and fear they have of being recognized for going into an ASO or an HIV clinic
  • Not taking their medication how they are supposed to because of the reminder that they are positive or the side effects
  • Lack of insurance (ADAP is getting better and we continue to fight for funding)

Health is a human right! When I was  fighting for funding for the AIDS Drug Assistance Program (ADAP) in Florida, I was basically told by officials: ‘We are NOT obligated to give HIV medication to anyone! You are not entitled!’ And as I told them: ‘Well until it happens to you or someone you love, you will not understand.’ I also told them, ‘How is it possible that third world countries give this life-saving medication for free and we are doing this to our own citizens? You will have blood in your hands!’

I know one thing…when I was given a month to live…had 39 Tcells and cervical cancer. ADAP saved my life. I don’t need it anymore because I have insurance…but I am grateful it existed!

I have written before that not everyone is an advocate or activist and not everyone is ready to come out of the ‘HIV closet’. But we can do it in a smaller scale..maybe helping out a friend that is having trouble understanding the importance of taking their medication or having a good case manager or a good HIV specialist. I also believe in being a big brother big sister to those that are new to this condition.

What I learned, or wanted to know more about at AIDS 2012 (IAC), is basically what I already knew from researching and being an international media activist…finding out new AIDS research updates (WE WANT A CURE). Seeing activists and advocates from all over the world was awesome for me! The change starts with the man in the mirror and together we stand, and divided we fall. We have to be united in this fight and fight fight fight for our human rights!

I am also for helping others around the world…but we have to take care of home and our own backyard first.

Social Media is a beast and I am using it like crazy! Spread the word! Blogging, creating spaces for people all around the world in the internet, Twitter , YouTube. I try to do it all in English and Spanish. The more I come in contact with the whole world or people here in the USA, the more I realize that the lack of information and myths still continue strong.

That is why I am here and why all activists and advocates are here. To change things. To continue the fight like those before us.

And all of those things I learn, I immediately bring it back to my community and I spread the information through media all over the world.

Together we can make a change.

Love and light,

Maria T Mejia

Moving Beyond Shame

August 7, 2012 in 2012 International AIDS Conference, Access2Care

Kate image Hope Tatoo

NOTE: This blog post also appears on the website of The Well Project here. As part of AIDS United’s Access to Care initiative, AIDS United and The Well Project are working together to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C.

I’m incredibly fortunate that I have not had many barriers in access to treatment for my HIV.  I have great insurance, the ability to pay for my medications (through my co-pay) and even a Health Savings Account (HSA).  A Health Savings Account (HSA) allows you to specify a certain amount of each paycheck toward health care expenses, such as co-pays.  This is great because it is pre-tax, is deducted from your paycheck each payday and the amount you allocate is available in full at the beginning of each year.  Honestly, the HSA has been my saving grace because I don’t have to budget for my family’s medications the majority of the year (until our HSA has been exhausted at least).

My biggest barrier in accessing treatment has been myself.  I must overcome the embarrassment and shame each time I go to my doctor.  Honestly, I still get nervous after more than 5 years of treatment.  Even attending the dentist or family doctor makes me anxious.  I often wonder if the staff talks about me, asking questions amongst themselves and speculating how I became infected or what I must have done to “deserve” this.

I struggle with whether or not I should even disclose to some health care providers, simply out of embarrassment.  Now, I have always disclosed to health care workers, I assume I’m protected by HIPAA (in the United States, health care information is considered confidential through federal law), but I still have a moment of hesitation.  The stigma associated with HIV scares me to even disclose to many of my friends and family.  I feel like I have worked so hard over the years to build a reputation of an intelligent, successful woman and fear rejection of those around me.

My husband has helped me in beginning to overcome this barrier.  Sometimes it’s hard to admit when your husband is right!  My husband has been supportive throughout this process.  But over the past year, has been exceptionally supportive.  He, like anyone, needed time to cope and deal with his diagnosis.  Once he was comfortable with his status and the fact that he didn’t do anything to “deserve” this, he has encouraged me to do the same.  He often tells me “Who cares what they think!  We didn’t do anything ‘wrong’ and shouldn’t be embarrassed.  We’re a loving family.”  (Again, I hate to admit when he’s right!)

My husband’s acceptance of our HIV status has led me to seek ways that I could advocate for those living with HIV, particularly in lifting the stigma attached to such a diagnosis.  Just as women have fought for women’s rights and the gay population has fought for gay rights, we affected by HIV must fight for HIV rights and thus reduce the stigma.

In attending the AIDS 2012 conference, I attended a session entitled “Women in HIV Research; Affecting Change“, which was organized by The Women’s Research Initiative on HIV/AIDS (WRI) and Dawn Averitt Bridge (which just so happens to be a part of The Well Project).  I had expected to hear how women were so cooperative and adherent to research studies.  After all, women seem more responsible than men!  But I learned that women face more barriers when participating in research studies.  According to the Women’s Research Initiative on HIV/AIDS, “women may face different logistical challenges than men when participating in research, such as familiarity with research sites and facilities, childcare and transportation challenges and lack of partner/spousal support of research participation.”  Honestly, I hadn’t considered this, but it made perfect sense!  I simply hadn’t been personally affected by these barriers, so had not considered them fully.  I am so grateful to have my own transportation, a supporting family to help with childcare and general support.  I pray for the women who are not as fortunate.  All women living with HIV are beautiful and deserving of research studies and treatment in general.  My hope is for everyone to be able to access those services and support which they need.  We are all worthy!