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.

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

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.

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

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!

The XIX International AIDS Conference has offered me a unique and exciting opportunity to meet with people around the globe who are dedicated to ending the AIDS epidemic. The synergy I felt being around such dynamic leaders was uplifting, inspiring and motivating. I enjoyed rousing speeches from outstanding public figures such as US Secretary of State Hillary Clinton, Black AIDS Institute CEO Phil Wilson, the Director of UNAIDS Sheila Dinotshe and entertainer/activist/philanthropist, Sir Elton John. Including the fact that I had the privilege of meeting and speaking with singer/activist Jamar Rogers, Senator Barbara Lee, actor and HIV/AIDS activist Danny Glover and HIV/AIDS activist Hydeia Broadbent it is hard to pinpoint one thing that impacted me the most.

However, the opportunity to attend a press conference on the State of HIV/AIDS in The DC Area was one of my most significant experiences of this conference. The press conference’s panel of speakers included Leo Rennie, the DCC Policy Committee Chair, Ron Simmons of Us Helping Us, Christine Campbell, Co-Chair of the DC Community Coalition for AIDS 2012, Tinselyn Simms-Hall of the Women’s Collective, Sabrina Heard, D.C. Resident and Flora Hamilton of Family and Medical Counseling Services. Panelist spoke about some of the positive strides the District of Columbia has made over the last several years, yet it was clear that the main purpose  was for community leaders across the D.C. area to continue calling on the District Government to broaden its approach to ending the HIV epidemic. Rather than waiting and hoping for the city’s leadership to develop a comprehensive strategy to address the District’s HIV epidemic, a group of individuals living with and affected by HIV and AIDS in the Washington D.C. metropolitan area founded the DC Community Coalition (DCCC) to take proactive steps to move the city forward on ending HIV. The coalition membership includes AIDS activists, faith leaders, women’s groups, transgendered persons, people living with HIV, social workers, health care providers, lawyers, researchers, youth, gay men, and sex workers.

At first glance one might think there are not many similarities between Baton Rouge and DC. However, the most obvious similarity is that both cities have initiated aggressive testing campaigns. As a result of expanded testing, both cities efforts have revealed some of the highest new AIDS case rates among major metropolitan cities in the country with Baton Rouge most recently ranking at number 2; a ranking usually held by much larger cities. Like DCCC, community leaders in Baton Rouge have recently convened to work with city government to develop new and expanded strategies to address HIV/AIDS education, prevention and care and treatment services in its metropolitan area. However, perhaps unlike DC, one of Baton Rouge’s major challenges is building capacity for providing the plethora of social services and primary care services needed to compensate for the influx of newly diagnosed individuals in the city. Also, one of Baton Rouge’s major challenges continues to be combating the overwhelming stigma that is attached to many of the areas’ AIDS service organizations and HIV primary care services. Stigma continues to be one of the greatest barriers for many individuals in seeking the care and services they need.

So, while the District of Columbia and Baton Rouge can show their HIV testing efforts have resulted in identifying many new HIV positive individuals it is clear that this is only the tip of the iceberg in terms of the work that has yet to be done. It will take the continued efforts of community leaders along with local, state and federal government to reduce new HIV infections, create and improve accessibility to HIV care services and retain individuals in HIV/AIDS related care. It is apparent that both city’s community leaders are dedicated to changing the tide of the epidemic in their respective areas and will have to continue to build coalitions to make a significant impact, not only on HIV and AIDS case rates but the access to care services.

Michael Robinson works on Louisiana Public Health Institute‘s Positive Charge access to care program, funded by AIDS United and Bristol-Myer Squibb.

I just went to a session that talked about the UN AIDS plan on how they will “Get to Zero.”  The goal is to have zero new infections, zero discrimination, and zero AIDS related deaths. This session was community-themed, so people were encouraged to ask questions or comment on the topics brought up.

Nesha Haniff was a panelist who spoke about the role that women play or should play in the movement forward in AIDS activism. She was a very assertive speaker, and she made a lot of points that I agree with. She emphasized her opinion on the female condom, which I found very understandable.  She argued: why should they be advocating a female condom in place of a male condom to “give women control over their safety” when a female condom has to be negotiated over as well. She said it was basically an inside-out male condom except it was more uncomfortable and you have to contort yourself just to use it. She also explained that the groups of people that are still getting new infections the most rapidly are women from ages 15-24. Unfortunately, because of lack of funding, organizations have to prioritize certain groups in order of who gets resources first. Young women are not one of these priorities. Haniff blamed this on The Global Fund.

She has a good point. If we really want to get to zero new HIV infections, young women certainly need to be accounted for. The issue I had with a lot of this session, however, was the negativity. I’m sure that if these organizations had enough money and resources, they would make sure women are also a priority. In fact, if they had enough resources, they would make EVERYBODY a priority because everybody matters. But the fact of the matter is that they don’t have enough resources. If these women were prioritized that would mean that children on their own would lose some of their funding. This is a problem that is nearly insolvable if you approach in from this perspective. What needs to happen instead is an increase of funding so that everyone is included.

Another main topic that was brought up was the idea of slogan-ing. People complained that the term “Getting to Zero” no longer has meaning. Haniff also said that  people hear too many slogans and not enough content. Just because people can recite a pamphlet doesn’t mean they know what it means. The second part I agree with. People should be given phrases without knowledge or ability to understand what they mean, especially in illiterate communities. As Haniff said, people cannot afford to be lazy in education.

At the same time, making slogans can really benefit the cause. Maybe for people who have been enduring this disease for 30 years are tired and need something with more substance for their hope. Some participants in this session even said that it is impossible to “Get to Zero.”  But it is very different for a lot of the younger generation. Just on Sunday Sophie and I were walking by a march and we cheered for the participants. Some enthusiastic young men turned excitedly to us and said, “We can do this! We can actually get to zero!” So maybe for some it seems intangible, but for others it’s a beacon of hope. And for all those who don’t believe it is realistic, in the words of Nelson Mandela, “It always seems impossible until it’s done”. Maybe some goals are set too high, maybe there will always be a few infected, but nonetheless, if you shoot higher, you will get better results. It may not happen by 2015, it may not even be in my lifetime that we get to zero. Still, trying and knowing that we have the technology for this to be a reality will push us farther than doubting the meaning of the slogan.

The last thing I wanted to mention is that negativity will not get us far. Of course solidarity is a key way to help relieve mental pain and suffrage by knowing that you are not alone and that you are supported. On the other hand, insulting politicians for not doing enough, though it may get you a little farther, may not be the best way to deal with things. Working with politicians, explaining the necessity for resources and financial support in a way that wins them over instead of forcing them to give in will get you more money, more passion, and more results.

by Sophia Denison-Johnston

Today we participated in the End to AIDS March. We started off at the Youth pavilion and helped two African girls draw signs on cardboard. One that we made said “We Want an AIDS Free Generation.”  Another said “People over Profit” and was depicted on a giant cut-out of an AIDS ribbon. After we had finished making the signs, we gathered in front of the youth pavilion with signs and cowbells encouraging others to join the march. We began marching through the global village. It felt so empowering- knowing that I was walking for a difference. I loved the feeling of joining forces with youth from Nigeria and Brazil and knowing that I was not only fighting for the rights of people in my community, but in ALL communities.

After marching through the Global Village, the protest made its way up several escalators- a part of the plan that probably could have been better thought out. A fellow marcher had a really tall sign that personified Big Pharma as a giant puppet. The signs were creative, but it was hard for hundreds of people carrying tall signs to maneuver up the snaking escalators. Finally everyone was on the grass and we began marching to the Novartis headquarters. There we lay down on the sidewalk like corpses and recreated a protest where some marchers went around and traced our bodies like a crime scene.

The one thing that made me uncomfortable was when the group started shouting the negative things. I mean don’t get me wrong, I agree that there are some serious problems – but I think that as activists we need to not just channel anger, but hope. If we want political leaders to support us, shouldn’t we be asking them to collaborate and help us? I think (and I may be wrong here) that there are more positive ways to go about the march. Rather saying chants like “Shame on Novartis,” we could be saying things like, “WE CAN END AIDS WITH YOUR HELP”.

I do really appreciate all the people who were shouting solutions and how to help rather than bashing and blaming- even if the blame is deserved. At this critical turning point, the last thing we as activists need is for political leaders to think that we are a nuisance.

Let’s get people excited about the end of AIDS, not angry at the obstacles.

Western North Carolina AIDS Project

The International AIDS 2012 Conference was an exhaustive and inspiring experience. I am always so humbled by the people I meet who have spent a good part of their lives battling against this epidemic and the stigma that fuels it. It is estimated that there were 24,000 of these dedicated individuals in attendance.  How can we all make the work and the lives of people affected by HIV/AIDS easier? Just follow the AIDS United Do-It-Yourself Guide to Influencing Policy on Capitol Hill!

Leading up to my visit to Washington, D.C., I decided to focus my efforts on my state of North Carolina’s two U.S. senators. They each had recently publicly addressed the AIDS epidemic. Senator Hagan co-hosted the Congressional Roundtable discussing the HIV/AIDS crisis in the South at the urging of our AIDS United public policy team (go team!). Senator Burr wrote an opinion piece on the global efforts to fight AIDS and the need to increase funding domestically for the AIDS Drug Assistance Program. This was suggested at a meeting in Asheville with the Senator. I knew I had a great conversation starter for both. “Thank you and here’s what we need from you now.”

My concern whenever I have these meetings is how to be most effective. As advocates for the HIV/AIDS cause in the South, we will be more successful if we speak with one voice. That’s why I love the AIDS United Do-It-Yourself Guide. It not only gives you a road map to getting in the door, it also lays out a unified message that can be repeated in every state illustrated by your own personal story.

I started by taking the AIDS United pledge to meet with my federal legislators.  Then, I skimmed through the Prezi presentation, which is a multi-media illustration on how to prepare for and meet with your legislators. You can do this at your own pace. There are useful tips for all levels whether this is your first time or you’re an old pro. Most importantly, it provides a timely list of “Asks” with the fact sheets to back them up. All of which are right there for you to download.  Make folders for your legislators with the fact sheets, your card, and information about your organization. You are ready for your meeting!

I contacted each senator’s local office in Asheville, NC a few weeks ahead. I explained that I would be in DC for the IAC and wished to meet with the senators while there. I ended up scheduling appointments with the staff members handling Health Care Policy. This is a perfectly acceptable response. I set the meetings back to back, allowing myself enough time to get from one building to another. I started at 10:30 a.m. and finished by noon. Both meetings were relaxed exchanges of information. The assistants talked about the work that their respective senator have been doing and I stressed the need for them to work together. I talked about how the policies passed in D.C. affect our clients at Western North Carolina AIDS Project. I wrapped up our discussion by asking both senators’  for their support of the three “Asks” plus one “bonus ask,” outlined in the AIDS United legislative visit DIY guide.

1. Protect and Implement the Affordable Care Act & Medicaid Expansion

2. Increase Funding for Domestic HIV/AIDS Programs

3. HIV Policies Based on Science, Not Politics

Bonus!  Join the HIV/AIDS Caucus

While you’re in your meeting, take note of the responses you get and whether they make a note of your requests. In your follow-up thank you letter, reiterate the “Asks” and take advantage of any information they might have shared to strengthen your case.

We are in the midst of an election year. It is now more important than ever to step up. We cannot allow HIV/AIDS policies to be made without the voices of those affected by HIV/AIDS and the people who have worked to improve their lives.  Our elected officials need to hear from us over and over again. If we all speak with one voice, our message will be heard. We can get to an AIDS-free generation.

One of my primary responsibilities as an Access Coordinator is to try to make contact with patients that have dropped out of care and get them back into the care. Many of the counties that these patients reside in are in a very rural area. I have found that patients often fall out of care not because they don’t want to take care of themselves or take their medicine but more often than not, have difficulty with obtaining transportation to the sites to get their care. Sometimes the issue of transportation can be resolved once they are in touch with their medical case managers but often it continues to be a barrier. The rural area of Northeastern North Carolina is not like many areas that have a wide variety of transportation services. The transportation system that services clients from our area is nearly non-existent. It consists of a few vans that pick up large groups of people with very long waiting times and this even changes depending on what county they live in. Some counties don’t even have this service at all.

I don’t have a solution to this barrier but believe until this barrier is removed or reduced we will always have people that will drop out of care regardless of the part of the world clients live in. To add to the problem in the area we serve the nearest medical provider that specializes in HIV care is on average 2-3 hours away from the 11 county service area we serve. The way we are attempting to address the issue in the Northeastern North Carolina Region 9 Network of Care is with the use of a mobile unit to bring care closer to the clients. We have 5 mobile clinics and 1 fixed site clinic that clients can come to for their lab/clinic visits. By doing this we are able to cut down travel time for clients as much as 1-2 hours in many cases; however, this doesn’t totally solve the transportation issue. We still have clients that can’t even get the needed 30-50 minutes’ drive to get to the care appointments now. Our next efforts were to attempt to resolve this issue so we worked with a local agency that was new to providing transportation to provide transportation for these clients. This has been a great help but even doing this we still face struggles since we have to be able to provide the transportation service a 72 hours advanced notice. In many cases clients need care appointments in less than 72 hour so we are still facing transportation issues.
Looking towards the future we must think about how we will sustain the program. As time moves forward the mobile unit is getting older and the client case load is increasing. We are going to eventually be faced with mobile unit break downs, an increased number of clients in the program and an increase need for transportation. The current program funding can only support so many costs. We are thinking now about plan B, C. Ideas have been tossed around about Telemedicine as a way to serve some of the more stable clients in an effort to increase the number of clients we can serve with the funding we have. At this point this has just been discussion. Another thought is to set up satellite clinics in each county where clients can come at any time to get blood work done, meet with medical case managers and providers. The goal is to work with current agencies that will share space (possibly local health departments) to prevent having the overhead cost. The satellite clinics could be staffed with volunteers to help current program staff. The volunteers could be people that are living with HIV/AIDS and have been train to operate in these areas. All data collected would be transmitted to the H.C.P.H.A. which would be entered into CareWare. This would not only eliminate the expense of operating the mobile unit but it would put people living with HIV/AIDS back into the work force in these satellite clinics. This would not only increase assess for our patients but could potentially add services to the clients in the community. The Hertford County Public Health Authority has been in the fight a long time and has learned a lot along the way but are always open to change in an effort to serve the clients. In saying this we realize we must change our methods of operating to accomplish this. We have to continuously try to think outside the box to serve the clients in our rural area. We would look forward to any advice you may have or lessons learned in your endeavors that you may be willing to share.

Working as an Access Coordinator and carefully watching my clients, I have come to realize that the more the clients know about their CD4 count and their viral load seems to improve their self-esteem. That improved self-esteem makes them more responsible for taking their meds on time and how detrimental it can be when they don’t take your meds on time. We really have to do something about the transportation issue around the world. If we don’t we will never and I mean never stop the spread of HIV/AIDS. I would like to thank AIDS Unity for given me opportunity to attend this conference and I look forward to answering any questions that you may have.

Tommy Jones Access Coordinator

Hertford County Public Health Authority