Don't Take Your Foot Off the Pedal

World AIDS Day provides a moment for reflection, to remember those we’ve lost from HIV in our community. Yet this time needs to be about more than just remembrance. It should also be a day for action.

Earlier this year our organizations wrote the News and Record to call on our General Assembly to expand access to health insurance (Better access to HIV medications would save lives 4/8/2016) by approving premium assistance for the AIDS Drug Assistance Program, NC’s state program that provides free HIV medication to low-income individuals. During this year’s budget process, we were thrilled to see that the General Assembly did just that. North Carolina was behind our peers across the South, and by authorizing premium assistance for ADAP North Carolina took an important step forward to provide better care for those living with HIV in North Carolina.

Access to health insurance will provide a greater range of healthcare services for those in need. It’s also a step forward for public health; studies have shown that HIV+ individuals who have full health insurance have better rates of viral suppression than those who only have access to HIV medication. Viral suppression occurs when individuals consistently take their HIV medication, and individuals who are virally suppressed will not transmit HIV to another person.

Premium assistance for ADAP is not enough to curb the HIV epidemic in North Carolina, and there is still more that needs to be done. Our state can not drop the ball when it comes to HIV treatment and prevention. We know the tools and policy solutions; the only question is will our policymakers have the political will to act.

We must continue to monitor and support a strong AIDS Drug Assistance Program. The rising costs of premiums and the outcome of federal decisions about the future of the Affordable Care Act may hinder the success of premium assistance in our state. ADAP is also supported by federal funds and voluntary rebates from pharmaceutical companies. Decreases in either of these funding sources could mean disaster for the hundreds of North Carolinians served by Triad Health Project in Greensboro and thousands across the state who depend on ADAP for lifesaving medication.

For years, state appropriations and funding for HIV and other STI treatment and prevention has been flat. This year, it’s vital that North Carolina General Assembly increase funding to help combat the rise of viral hepatitis in our state. The Centers for Disease Control estimates that one third of people living with HIV in the country are coinfected with hepatitis B or C, which increases the likelihood of liver-related health problems and other life-threatening complications. Hepatitis can be cured, but the treatment is expensive and funds for testing and prevention are limited in North Carolina.

Finally, we can’t take the eye off on the ball when it comes to HIV prevention. Our young people must be armed with the facts about condoms and contraception, and the skills to navigate healthy relationships as teenagers. The advent of PrEP has also changed the prevention landscape. PrEP is medication that individuals can take that will significantly reduce their chance of contracting HIV. We need local leadership in our health departments, colleges (especially our HBCUs), and doctor’s offices to guarantee that those most at risk have information about PrEP, the ability to get a prescription, and the financial resources to afford it.

In their 2013 HIV Surveillance Report, the Centers for Disease Control released the cities with the highest rate of new infections per capita, and Greensboro was in the top 20 (as was Charlotte). Now is not the time to take our foot off the pedal when it comes to addressing HIV in our community. We have the tools to end new transmissions and ensure those living with HIV are virally suppressed and live long, healthy lives. To do anything else is inexcusable. 

- Lee Storrow is the executive director of the NC AIDS Action Network. Reidel Post is the executive director of the Triad Health Project.

Why More is At Stake This Election Than You Think

Unless you have been living under a rock for the past year, you will likely already know that Tuesday, November 8th is Election Day across the United States. To say that this election cycle has been been hard to watch would be an understatement. The news cycle has been primarily focused on the general public’s disdain towards the candidates and the nasty attacks and harmful rhetoric that has been on display for the world to see (and hear). While having to select the next leader of the free world in these conditions may seem to be disheartening for some, we still need to participate in the political process because too much is at stake.

In addition to voting for our next President in the national election, we will also be voting in state and local level elections, which has more of a direct impact on our day-to-day lives. Here are a couple of things to consider if you are wondering what is at stake in this election and if you should even bother heading to the polls:

Protect Progress That We Have Already Made

It may be easy to assume that voting doesn’t matter, but it does, especially for the HIV/AIDS community. We must be sure to protect the hard earned legislative victories that we have already achieved for our community. The AIDS Drug Assistance Program (ADAP) provides HIV-related prescription drugs to low-income individuals with limited or no prescription coverage and reaches over a third of all people with HIV receiving care in the United States.  The state of North Carolina once had the longest ADAP waiting list in the nation. As a result of the North Carolina AIDS Action Network’s advocacy efforts with state legislators, North Carolina’s AIDS Drug Assistance Program ended its waitlist and remains fully funded.

Last year, advocacy efforts with the NC General Assembly led to the expansion of the state’s AIDS Drug Assistance Program to allow the program to use funds to help clients purchase health insurance through premium and cost-sharing assistance. Studies have shown that premium assistance programs lead to better health outcomes and better viral suppression rates for patients. When someone is “virally suppressed,” it means that they have very low levels of HIV in their body, significantly reducing the risk of transmitting HIV to another person. Moving ADAP clients onto health insurance programs will help them access important health services to manage other health needs that are currently out of reach for many. We cannot afford to lose state funding for these vital programs that literally save the lives of the 35,000 people living with HIV/AIDS in North Carolina.

Healthcare Access- Closing the Medicaid Coverage Gap

North Carolina is currently one of the few states that has not expanded Medicaid coverage. The Kaiser Family Foundation estimates that in North Carolina, 244,000 people do not have any option for affordable coverage; however, it is estimated that nearly 500,000 people would be eligible for coverage if the state expanded Medicaid and closed the coverage gap. The Cone Health Foundation released a report analyzing the economic impact of expanding Medicaid in 2016 and found that closing the gap in North Carolina would result in net savings for the state budget, despite any new costs of the program. The report also estimated that if North Carolina expanded coverage in 2016, the state would see $318 million in net state savings from 2016 to 2020. It is clear to most people that not closing the Medicaid coverage gap would prevent lower-income people from getting coverage, but what is often not discussed is that not expanding Medicaid would literally result in death for the most vulnerable people, especially those living with chronic illnesses like HIV/AIDS. In North Carolina, 1,100 people have died as a result of being in the Medicaid coverage gap. Voting for state legislators who sense the urgency of closing the Medicaid coverage gap and will work to expand access to the most vulnerable could literally be the difference between life and death.

PrEP Access in North Carolina

PrEP is an HIV prevention strategy that would allow individuals who are HIV-negative to take anti-HIV medications before ever coming into contact with HIV, which would reduce their risk of becoming infected. The medications’ power works to prevent HIV from establishing infection inside a person’s body. PrEP has been shown to reduce risk of HIV infection through sex for gay and bisexual men, transgender women, and heterosexual men and women, as well as people who inject drugs.

While PrEP does not protect against other sexually transmitted infections (STI) or pregnancy and is not a cure for HIV, its introduction into the world of HIV/AIDS treatment will have a serious impact on substantially reducing the amount of new HIV infections throughout North Carolina, the South and the United States. The Southeastern United States has the highest HIV diagnosis rate of any US region. Specifically in North Carolina, we have two cities on the CDC’s list of the top 25 US cities and metropolitan areas with the highest rates of new HIV infections: Charlotte and Greensboro.Reading statistics like that, it appears that North Carolina is on the verge of a potential HIV epidemic if state and local governments do not immediately take action. This election season, we have the power to elect officials who will work to expand PrEP access to communities vulnerable to HIV in order to prevent a public health crisis in the state.

Preventing Discrimination & Stigma in North Carolina

In March 2016, the NC General Assembly passed House Bill 2, the harmful legislation that significantly stripped discrimination protections for the LGBTQ community in the state of North Carolina. Having a piece of legislation like that on the books has already demonstrated to have a negative economic impact on the state, but it also has the potential to have a negative impact on the HIV/AIDS community by perpetuating stigma and discrimination against the community. Victims of stigma and discrimination are often deterred from seeking life-saving medical services, like HIV testing or treatment. We must stand together and show our determination in fighting against harmful legislation that impacts the lives of LGBTQ North Carolinians and the HIV/AIDS community through voting, calling for the full repeal of HB2 and passing much needed protections.

Voter Suppression in North Carolina

This past July, the Fourth Circuit Court of Appeals invalidated most of North Carolina’s 2013 voting rights law, which imposed strict voter-ID requirements, cut back early-voting hours and eliminated same-day registration, out-of-precinct voting, and pre-registration for those under 18. State legislators claimed that early voting presented more opportunities for “violations,” even though there is virtually no evidence of fraud. In its ruling, the Fourth Circuit said that lawmakers “failed to identify even a single individual who has ever been charged with committing in-person voter fraud in North Carolina.” This archaic type of voter suppression should place everyone on notice that the integrity of American democracy is on the line. We cannot allow for state lawmakers to use their legislative power to disenfranchise (largely minority) voters. What better way to take a stand against voter suppression than to vote?

Looking to the future, there will be many more decisions that will be made that directly impact people living with HIV/AIDS, such as affordable housing and funding for treatment, prevention and supportive services. This election is soo much more than your love or hate for two candidates. The future of our state is on the line. Now more than ever, we must ensure that we continue to advocate for our community through our vote on the federal level, but also on the state and local levels.

Happy Election Day!

-Christina Adeleke, Esq., NCAAN Communications and Development Coordinator

Importance of Your Voice

Since the start of this semester, I have been working for the North Carolina AIDS Action Network. The Elton John AIDS Foundation has graciously financially supported my work with NCAAN.

After accepting my sexuality as a gay man, one of my biggest fears became contracting HIV. I come from a low-income, Latino household, one that used to be undocumented, so there existed many barriers for my family and I to have access to information that would destigmatize HIV and its intersection with queerness in our communities.

I had this idea that because I was gay, I would contract HIV and my family members and loved ones would disown me. The culmination of this fear was that love with another man would be unattainable.

I have been very lucky to befriend people that have helped me destigmatize HIV, both in the community and in myself.  I have reached a level of comfort where I can speak on how I can reduce my risk of contracting HIV, not because being HIV positive would be a lapse in my moral character, but because the working systems of society have made it difficult for people with HIV to live fulfilling lives.

While working at Pride events across the state with NCAAN, I have been able to interact with both HIV positive and negative individuals. These interactions included me working at booths and passing out information, but what has been the most moving for me has been the times when people have shared their status with me, unsolicited.

One of the particular handouts we give at the NCAAN booth includes a small booklet from a pharmaceutical company that has thirty quotes, each for a day of the month, of people with HIV that gives insight into a part of how that individual’s life has changed since they knew their status.

It was one of the pieces of information that moved me the most. It held genuine pieces of people’s stories. It told me about their fight for survival in a society that attempted to disown their humanity and push them further into the shadows, while also letting that person with their newly discovered status know that they would be content and okay.

One of the goals that we have at NCAAN is to increase the accessibility of HIV preventative services to individuals across the state. We also relay information about how to stay “safe,” and we do all as an attempt to decrease the spread of HIV across North Carolina.

While talking to Matt Martin, one of my supervisors, one of the most difficult things that we encounter is a way to amplify preventative information and services, at the same time attempting to discontinue the stigmatization that being HIV positive is a mark of death – stereotypes that have harmed the personal relationships and whole lives of individuals in our LGBTQ communities.

Simultaneously, we tell people to be safe and weary of how to prevent the contracting HIV, while at the same time telling them that it’s okay to be HIV positive, and that a full, healthy life is possible.

The most important voice in the act to destigmatize HIV is the voice of the same people that are being shunned from society. When people with HIV speak of their experiences, they push, implicitly, the taboo of HIV into the light of everyday life. We have all probably met someone with HIV, whether they know it or not, and whether we know it or not. They deserve the same respect and love that we would expect.

In a society that has consistently asked HIV positive individuals to feel wrong and embarrassed about their status, these individuals fight to speak up. Even though the burden is being placed on those that are already burdened, the weight of that voice allows people like me to feel comfortable to reach out and reside in an environment that will allow me to live with health and with love – something that was so far from reach as a closeted child.

-Erick D. Aguilar, Outreach Analyst Intern for the NC AIDS Action Network

My Time at Speak Up! 2016: A National Leadership Summit for Women

Where do I begin in even trying to describe the empowering, engaging and amazingly awesome women's leadership summit held in Fort Walton Beach Florida from September 27-30, 2016?  There were over 250 women living with HIV from 30 states, Canada and the U.S. Virgin Islands gathered in unity sharing a safe space where we were able to learn, share, laugh, cry and rejuvenate. We had the opportunity to participate in numerous workshops facilitated by women who are vivacious leaders. These workshops helped us to build our skills in leadership and learn about our current local, state and federal policy concerns that affect women living with HIV. We also developed a better understanding of social justice and human rights for women living with HIV while also having the opportunity to bond as a sisterhood and get to know one another on more intimate levels. I truly thank my NCAAN family for contributing and allowing me to have the opportunity to be a part of this unforgettable experience.

There were women who attended this summit that I have known for a very long time through social media and conference calls, but I finally got a chance to hug on them, love on them and share with them. It was truly an honor and a great experience to be surrounded by so much diversity from women who share the same passions of advocacy, prevention, rights and justice in our communities. Many of us were pushed out of our comfort zone so that we could be transparent, heal, and realize that while there may be many women with different stories; we all share similar challenges in our lives.

I was a part of the 2016 Speak Up! Summit Planning Committee along with 20 other women and I had the opportunity to welcome all of the ladies who were in attendance. I had no idea that I would be asked to welcome the group, but as a leader you have to always be ready to lead. It was truly an honor as a first time attendee and a part of the Summit Planning Committee to take on that responsibility, I am truly grateful. Some of the workshop topics included: Standing Up to Stigma in Your Community, Criminalization as it Impacts People Living with HIV, Sex Workers, People of Trans Experience and People who Use Drugs, HIV & Aging Adult Women, and Intergenerational Leadership.

Those are just a few of the very powerful workshops that we had the opportunity to experience over four days.  There were not just workshops, but we also had film screening nights and fun nights, which consisted of arts & crafts, games, dancing and singing. Not to mention the great meals we had for breakfast lunch and dinner. Many of the workshops impacted me, but I was really intrigued by the workshop on intergenerational leadership, which involved women living with HIV over the age of 40 and women living with HIV who were under the age of 40. This particular session truly opened my eyes more to the younger generation of leaders who are living with HIV and working on carrying the torch after the older generation rests. Creating a path for younger generations to take on leadership roles and continue to carry the torch is a passion of mine. It is truly up to us to lead our future leaders with love, acceptance and encouragement. It is important to trust the younger leaders and allow them to grow, learn and even make mistakes. The older generation of leaders have to build relationships with the younger generation of leaders, create safe spaces for them to open up and grow, have patience with them, teach them, listen to them, allow them to share their ideas and experiences which can be beneficial to contributing to change.  

This summit was a great experience, which empowered me to take the information that I received out into all communities that I come into contact with, so that I can be as a vessel to help teach and encourage others to take back their power against stigma and criminalization. If you have not had the opportunity as a woman living with HIV to experience this bonding experience, or you would like to know more about being a leader/advocate in your community, then please contact PWN-USA or North Carolina AIDS Action Network (NCAAN) by going to the website for more information.  

https://pwnusa.wordpress.com/

http://www.ncaan.org/

Alicia Diggs NCAAN Board Member, Board Affairs

North Carolina member of the Positive Women's Network USA  

Statement of Solidarity

The recent shooting and death of Keith Lamont Scott and the protests that have followed have unveiled unfortunate truths that run deep within our community. The issues related to the harsh reality of racism are not new and the anger and pain suffered as a result are real. We must have the courage to listen to those who are hurting around us, to respond to the injustices that have been occurring and to act now. The changes that will be required to remove systemic racism in our systems and structures will not be easy or comfortable, but it is necessary.

The North Carolina AIDS Action Network proudly stands in solidarity with and will fight alongside those taking a stand in demanding that all people be treated equally and fairly. As an organization that serves the HIV/AIDS community, we consistently see the role that racism and discrimination plays in perpetuating stigma and how detrimental its impact has on our community. Dr. Martin Luther King, Jr. said, “Injustice anywhere is a threat to justice everywhere.” As an organization, we are taking a stand and actively commit ourselves to the ongoing work of creating a community of fairness, justice and equality for all.

- North Carolina AIDS Action Network

Recap - Stronger Together HIV/AIDS Advocacy Conference 2016

Over one hundred HIV advocates from across North Carolina and the South made their way to Winston-Salem State University for Stronger Together: NC HIV/AIDS Advocacy Conference 2016 on Saturday, September 10th, 2016. The annual all-day conference, hosted by the North Carolina AIDS Action Network and the North Carolina Harm Reduction Coalition,  included plenty of breakout sessions for advocates to learn how to fight for the rights of people living with HIV/AIDS, hepatitis, people who use drugs, sex workers, and affected communities from grassroots leaders and respected experts.

The conference included a variety of HIV/AIDS-focused workshops, including “HIV is Not a Crime” and “The Trans Community, HIV Stigma and HB2.” “Much has changed in the landscape of trans equality over the last year,’ says Crystal Richardson, Esq., the Director of Advocacy at Equality NC.  ‘Available data, which is mostly limited, shows an alarmingly high HIV rate among the trans community, and legislation like HB2 and negative dialogue about trans individuals in North Carolina and across the South stigmatizes those most in need of services.”

Prior to the official start of the conference, the NC AIDS Action Network, along with the North Carolina AIDS Training and Education Center (NCATEC), hosted PrEPing for 2017: North Carolina Moves Forward, a PrEP-centered pre-conference summit, on Friday, September 9th, 2016 at The Hawthorne Inn and Conference Center in Winston-Salem. The summit covered PrEP (pre-exposure prophylaxis) and future plans to expand PrEP access throughout the state.

"With North Carolina, along with the rest of the deep South, being in the heart of the current HIV epidemic, our state needs to increase HIV/AIDS prevention efforts statewide through syringe access, safer sex education in schools, and, through access to PrEP,’ says Amanda Stem, Advocacy Supervisor at the Western North Carolina AIDS Project in Asheville, NC. ‘North Carolina currently has two cities on the list of top 15 cities in the nation with the highest amounts of new HIV infections, which are Greensboro and Charlotte and increasing access to PrEP in our state is a vital tool in reducing transmission rates. PrEP is another tool in the toolkit for prevention but studies show it is highly effective, especially when used with condoms, antiretroviral treatment for people living with HIV, and drug use treatment. HIV is not a virus with a one shot cure-all and right now it takes many tools to prevent and treat, but if this proven prevention method is out there, then why aren't we making it easier to get?"

Advocates are optimistic for the future of people living with HIV/AIDS in North Carolina. This past year, the NC AIDS Action Network has experienced various legislative victories for the NC HIV/AIDS community on the state and federal levels, including the NC General Assembly expanding the AIDS Drug Assistance Program to allow the program to use funds for premium assistance and Congress unanimously passing legislation that would modernize the Housing Opportunities for Persons with AIDS (HOPWA) funding formula, which would allocate HOPWA funding based on the number of people currently living with HIV instead of the current cumulative formula.

-Christina Adeleke, NCAAN Communications and Development Coordinator

Welcome Matt Martin to NCAAN!

Comfort is something that we focus on in every aspect of our lives.  We want clothes that are made from the softest materials, beds that mold to fit our bodies just right, and even technology that makes it so we never have to leave the comfort of our couch.  Think about it!  From birth, children are given comfort objects that help them when they are fussy or upset, so it only makes sense that, in everything we do, our goal is to be comfortable.  The funny thing is, it wasn’t until I became uncomfortable that I truly became happy.

When I graduated from high school, I had my whole future planned out.  I would go to college with my scholarship papers in hand, major in music education, take all the classes I needed, have a stellar experience with my student teaching program, graduate with my degree, obtain a job as a middle school band teacher, and live happily ever after.  It was set.  Music was my “comfort” zone that I excelled in, so naturally that was the career path that I chose.  I spent my entire college career making sure that I stayed on track to make my future as comfortable as possible. I got a call, after graduating in 2013, which offered me a job as the band teacher of my very own middle school program.  Alas, everything that I had been working so hard for had finally come into fruition, and it was time to make my plans a reality.

As I began my teaching career, within days I realized that I was unfulfilled.  Here I was, twenty-two years old, doing exactly what I had planned for so long, and I wasn’t happy.  My “comfort” had quickly become the thing that obligated me every day when I woke up.  I realized that in my years of preparing myself for my future, I completely forgot to find what really fulfilled me.  I was so concerned with staying inside the box of my “comfort” zone, that I let my passions go to the wayside.  In the name of my “comfort,” I became uncomfortable.

The interesting thing about being uncomfortable is that it forces you to fight for yourself and approach life in a different way.  As I continued to be unhappy with everything that I tried in my teaching career, I started seeking out what it was that I truly wanted.  I reflected on the things from my past that truly made me feel fulfilled, and one common trait kept showing up: fighting for what was right.  For as long as I can remember, I have been passionate about helping people and advocating for social justice.  I wasn’t always able to be super involved because of the predetermined plans I had set for my earlier self, but, when I was able to partake in issues of advocacy, an overwhelming feeling of fulfillment consumed me.  Even in my teaching career, I realized the part of the job that I did enjoy was when I was able to advocate for a student who was struggling.  So, there it was, my answer to the lack of fulfillment, staring me directly in the face.  I knew what I needed to do.

After two years of being unhappy and unfulfilled, I took the leap of faith and decided to resign from my “comfort” plan.  I did all that I could to become involved in issues of social justice and advocacy in order to make my passions a reality.  It wasn’t easy.  I applied to job after job with no feedback; I volunteered with advocacy organizations whenever I could; and, though I was tired and stressed and worried, the satisfaction and passion that I felt far outweighed any fear that I had.  I finally landed a job with the TurnOUT! Charlotte campaign, then again with the TurnOUT! NC campaign.  For the first time, I woke up every morning excited for life and the fight for justice that I knew was my purpose in life.  I found that the fight for intersectional equality introduced me to a side of myself that I didn’t know existed, and it wasn’t until I made myself uncomfortable that I truly became happy.

So, it is after all of this that I get to say that I am ecstatic to join the team of the North Carolina AIDS Action Network as the Grassroots Advocacy Coordinator.  I am ready to join in this fight to empower and advocate for those impacted by HIV/AIDS.  I care so deeply for people and equality, and I will do all that I can to make a difference in this world.  Your struggle is my struggle.  Your fight is my fight.

In the words of Dr. Seuss, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”

- Matt Martin, NCAAN Grassroots Advocacy Coordinator