Tuesday, June 21, 2016

HIV/AIDS Advocacy Day 2016

On June 7th, 2016, the North Carolina AIDS Action Network (“NCAAN”) held its annual HIV/AIDS Advocacy Day at the North Carolina General Assembly in Raleigh. The convening brought together around 50 advocates from across the state to talk with legislators and policymakers about issues related to HIV/AIDS.
The morning kicked off with an orientation and training on how to conduct legislative meetings and concisely communicate information. NCAAN staff outlined key campaigns including providing ADAP insurance premium assistance and the impact of closing the Medicaid gap for people living with HIV/AIDS. Advocates were organized into five regional advocacy groups and were provided with a list of legislators to target for their morning visits.
The groups were organized to highlight the diverse and intersecting communities and constituents impacted by and working on addressing HIV/AIDS in North Carolina. For example, one group consisted of  local community advocates from Alamance County, legal experts from Duke, UNC public health professionals and local and regional organizers.


Advocates met with many legislators throughout the day and shared their perspectives and information about ADAP funds being used to pay for healthcare premiums and providing compressive treatment and care for those living with HIV/AIDS. Building diverse coalitions of stakeholders allowed policymakers to hear a variety of perspectives on an issue and strengthened advocacy efforts through each individual’s expertise in specific areas.  
HIV/AIDS Advocacy Day provides the unique opportunity to bring together a community of advocates who are working together to create change throughout North Carolina. One of the groups had the opportunity to meet with the Democratic Minority Leader, Representative  Larry Hall of Durham, and discussed emerging HIV prevention strategies, such as pre-exposure prophylaxis (“PrEP”), and the potential impact they could have for many North Carolinians. They were able to highlight a number of issues including how increasing patient access to the medication would slow the spread of HIV in North Carolina, as well as affordability and insurance coverage issues.


Speaking directly with Rep. Hall allowed advocates to provide him with relevant information and follow-up on any questions he had. Additionally, building and strengthening the relationships between our grassroots advocates, elected officials and the leadership of NCAAN allows us to continue the important work of addressing HIV/AIDS here in North Carolina.

- Ryan Drab, NCAAN intern

Wednesday, June 1, 2016

Speaking Up for the HIV Community on Medicaid Reform

Last year, the North Carolina General Assembly passed legislation that began the process of privatizing Medicaid in our state. Under the bill passed, “the state would enter into contracts with three companies that would offer statewide health insurance plans for Medicaid recipients, as well as up to 10 contracts with “provider-led entities” - networks of doctors and hospitals and that would offer regional plans.


The process of privatization commenced this spring with a listening series hosted by the Department of Health and Human Services to receive input on a draft waiver that’s being submitted to the federal government today. Since a large amount of Medicaid dollars are provided by the feds, they must approve the waiver if North Carolina is to make significant changes to our Medicaid program. Listening sessions were held across the state, and NCAAN had advocates attend a number of the sessions to speak during public comment about the needs of those living with HIV in North Carolina.


HIV doctors and advocates spoke at the first hearing in Raleigh. Dr. Michelle Ogle, an HIV doctor from Vance County spoke about the need for HIV+ patients to be able to access specialty care. At the listening session in Huntersville, Christina Adeleke, NCAAN Communications and Development Coordinator, spoke about the importance of closing the Medicaid coverage gap in our state, and heard the stories of many who would benefit if the state did so. In Greenville, NCAAN advocates Esther Ross and Dr. Paul Cook spoke about how important Medicaid is to many low-income North Carolinians, including those living with HIV.


In addition to the listening sessions, DHHS provided an opportunity for citizens and advocacy groups to submit written comments. NCAAN partnered with the Duke Health Justice Clinic to submit written comments on our concerns related to maintaining and expanding care for those living with HIV on Medicaid. Our comments were written in partnership with a advisory committee of individuals living with HIV, medicaid providers, advocates and staff at AIDS service organizations, and endorsed by over a dozen national, regional, and North Carolina based organizations.




Today, the waiver will be officially submitted to the federal government. When it was presented at the legislature this morning, the staff even noted that one of the major themes they received during public comment was the need to maintain access to HIV specialists.

This waiver submission is just the first step in a long process, and North Carolina’s new Medicaid system is going to built in the months and years ahead. We’ll continue to advocate for the needs of those living with HIV in our state as we implement a new Medicaid system.

-Lee Storrow is the Executive Director of the North Carolina AIDS Action Network.

Wednesday, May 4, 2016

Good Health Outcomes Shouldn't Be a Partisan Issue


Yesterday, a new study on Virginia’s AIDS Drug Assistance Program (ADAP) was released in Clinical Infectious Diseases, one of the leading scientific journals of infectious diseases. The study looked at a cohort of individuals enrolled in Virginia’s ADAP. About half of the individuals were enrolled in a qualified health plan with premium and co-payment assistance from ADAP, and the other half only received HIV medication.


The study found that access to full health insurance was associated with better viral suppression rates by 6 percentage points, “an essential outcome for individuals and public health.” Dr. Kathleen McManus, the lead author of the study, talks about the outcomes in this video.


As Dr. McManus notes in the video, there are some “political questions about this study… Good health outcomes shouldn’t be a partisan issue.” While North Carolina does offer co-pay assistance for those living with HIV, we are one of just a few states in the country that does not support access to health insurance for ADAP clients by paying for premiums.  Lack of assistance with premiums has resulted in underutilization of the co-pay assistance that is offered. In North Carolina, only 180 ADAP clients were in the insurance assistance program as of April 8, 2016, in contrast to over 3000 clients in Virginia.  With this study, there is clear scientific evidence about the benefit of premium assistance. The North Carolina General Assembly needs to follow the lead of Virginia and enact premium assistance in short order during the legislative short session this year.

Lee Storrow is the executive director of the North Carolina AIDS Action Network. Allison Rice is the director of the Health Justice Clinic at Duke Law School and a member of the North Carolina AIDS Action Network Board of Directors.

Wednesday, April 13, 2016

The Moment I Realized Medicaid Reform Was a "Big Deal"

I have to be completely honest, health insurance was not something I really thought too much about until I got older. Like, “you are finally an adult with bills so you need to think about this now” older. As a child, it was not something I actively thought about. One, I was a kid so health insurance was definitely not high on my priority list and two, I was not a “sick kid,” so I only really went to the doctor’s office when I had to get vaccinated or get a physical to play sports at school (which was also rare). It was not until I reached the magic age of 26 that I was faced with the harsh reality that health insurance is necessary. And very expensive.


Like most young adults, my first job did not immediately shower upon me loads of money. I made enough money for bills, essentials, and literally nothing else, including health insurance. When I tried to get coverage under the Affordable Care Act (ACA), the only plans that I qualified for were completely out of my budget. When I tried to apply for Medicaid, I was told that I made too much money to qualify but if I had a child, things would be different, which was puzzling to me. Did the the fact that I had a child or not change my very real reality of not being able to afford health insurance? Before I had too much time to seriously weigh those options, I got offered a new job...WITH BENEFITS. To say I was excited would be an understatement. Now, I did not have to load up on vitamins to prevent myself from getting sick or entertain the idea of having a child in order to get health coverage. I assumed that everyone who was struggling to get health coverage was like me and when they found the right job or opportunity, they too, would be covered as well. I was very wrong.


On March 31, 2016, the North Carolina Department of Health and Human Services (NCDHHS) held a public hearing in Huntersville, NC, in order to get public input about the privatization of Medicaid in North Carolina. 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. Everyone from health providers to legislators to community organizers were all in attendance. Also in attendance were Medicaid beneficiaries, the people whose care will ultimately be affected by these proposed changes. After a brief introductory presentation about the proposed Medicaid reforms, the hearing was opened for public comments.


As expected, we heard from a number of doctors and legislators, whose main concerns appeared to be financial. Most doctors present were in support of Medicaid expansion because they saw first hand the negative implications of not closing the gap in their hospitals. They reported about patients who would come to the emergency room instead of a general practitioner for treatment because they could not afford the doctor’s visit. Since emergency rooms do not turn away patients, hospitals are forced to eat up these additional costs. Expanding Medicaid coverage reduces uncompensated care that hospitals and other healthcare providers currently absorb, which would lead to a stronger health system that is better able to take on innovative approaches to reduce costs and improve care.
Legislators who spoke during the public hearing discussed the financial ramifications of closing the Medicaid gap and the financial impact that it would have on the state’s budget. 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.  


As the public hearing went on, the conversation started to take on a more personal tone. More and more participants shared their personal experiences of being in the Medicaid coverage gap. We heard from a man without children who previously lived in another state where he had coverage, but was later placed in the coverage gap after he moved to North Carolina and later sustained serious injuries that required medical treatment that he could not afford. Another woman shared the story of her son’s current unique placement in the coverage gap. A few years ago, this woman’s son suffered a severe brain injury that required extensive long-term medical treatment, which was covered under Medicaid. However, a slight change in injury classification requirements resulted in her son not qualifying for Medicaid, placing him in the coverage gap. Why should someone with a severe brain injury not get the treatment he needs because he does not have the “right kind of brain injury?”


Towards the end of the public hearing, an older man talked about how he was recently diagnosed with diabetes. He stated that if it were not for Medicaid, he would literally be dead because he would not be able to afford all of the medications that he would need to stay healthy. It was not until this man spoke that I really felt the gravity of this debate. I knew that not expanding Medicaid would prevent lower-income people from getting coverage, but what I did not realize was that not expanding Medicaid would literally result in death for the most vulnerable people, especially those living with chronic illnesses. In North Carolina, 1,100 people have died as a result of being in the Medicaid coverage gap. Expanding Medicaid is so much more than just a “great idea;” for many, it could be the difference between life and death. Let that sink in for a minute. Expanding Medicaid will literally save lives. When you think of it in that context, it immediately becomes a black and white issue. We have to not only expand Medicaid in North Carolina, but we must also be sure to represent the needs of everyone affected to ensure that no more lives are lost unnecessarily. The need to expand Medicaid coverage in North Carolina can no longer be seen as just an option that policy-makers are entertaining; it needs to be a priority. We cannot sit and watch the people of our state die around us while we have the opportunity to stop it.  

Monday, March 14, 2016

Meet Christina

Last week, Christina Adeleke joined our team as communications and development coordinator. Christina is a graduate of Lee University and Charlotte School of Law. She comes to us after working with Equality NC and the Freedom Center for Social Justice. Christina will be based in Charlotte and working out of Carolinas CARE Partnership, allowing us to increase our work in an area of the state with our highest HIV rate. Learn a little more about Christina below, and feel free to drop her a note at Christina@NCAAN.org. I know she's looking forward to getting to know our community! 
Orison Swett Marden said, “Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.” In my short journey in life, I have learned that it is foolish to base your life on what you see instead of what you can imagine and dream for yourself.
Being the child of Nigerian immigrants definitely has had a unique impact on my upbringing. My parents came to the United States with a couple hundred dollars in their pockets and a desire to achieve the American Dream. They left a country with limited opportunities to the land full of opportunity. Leaving everything that they knew involved so many risks, but it was a gamble that they were willing to take. If coming to America allowed them to achieve their dreams, then America is where they needed to be.
My parents worked incredibly hard to find success in America and we were, by no means, the family with a money tree in our backyard. My mother worked nights and my father worked during the day so it was always difficult to make sure that my brothers and I were being watched. Peanut butter and jelly sandwiches everyday were the norm. Things like Whoppers from Burger King were considered treats and days like Christmas were just another day. As a child, I was observant and aware of my surroundings. I encountered people who were in tough and hopeless situations. Even though my family was struggling, my parents always taught us to still reach out to those that were in need around us. Even as a child, I always had a strong desire to help the people around me. If it meant offering the little that I had to someone I felt needed it more than I did or sticking up for the classmate that was being bullied, I always felt the “need” to intervene the best way that I could. This “need” would definitely shape who I would become in the future.
Even though my parents eventually found success and achieved the American Dream, I did not forget where I came from or how I was raised. I did not forget the people who were in hopeless situations. I felt like the older I became, the more my eyes were opened to how bad people’s situations actually were. It was not just the fact that some people did not have enough to eat or a place to live. It was the mind-blowing fact that some people were ostracized because of who they loved or for simply being themselves. It was also the fact that the most vulnerable people were consistently overlooked by a government designed to “protect them” My heart broke for these people. I felt the “need” to step in somehow. These people who I had lived alongside of were in need of someone who could speak on their behalf.
I always knew that I wanted to dedicate my life to advocate for those who were unable or scared to speak for themselves. At that point, I knew I wanted to be a lawyer. As a lawyer, I would be able to stand alongside those who were in need and empower them to take control of their lives and better their situations. I would be able to provide justice for those who had been wronged. I would be able to be a voice for those who did not have a voice. I wish I did not have to do this, but we live in a fallen world. So many injustices go on around us in the world and not much is being done to help or prevent them from happening. If no one else is willing to do anything, then I will. I refuse to just sit there and let these things continue to happen as they are.  
With all of that being said, I am so honored to be a part of the NCAAN team. NCAAN has demonstrated and exemplified its core mission of improving the lives of people living with HIV/AIDS in North Carolina and I cannot wait to join the fight! I have big dreams of empowering the powerless and restoring what people could have been to who they can become. Let’s get to work!

Thursday, March 10, 2016

Ending HIV in Women and Girls


35 years into the HIV/AIDS epidemic, I’m afraid many of us still hold the same misconceptions and stereotypes that were prevalent in the early days of this disease; such as HIV/AIDS is a disease that occurs exclusively among men who have unprotected sex with other men. And men in the United States are still diagnosed at higher rates than women. But nationally, about 25% of people livingwith HIV are women, and the vast majority of them contract the infection from heterosexual contact.  In North Carolina, 29% of those living with HIV are women, and black women have the highest rate of infection. While messages of practicing safer sex and addressing risky behaviors are good educational strategies for preventing transmission, we can’t ignore the larger cultural norms that can make women vulnerable to HIV in ways that many men may not be.

On National Women and Girls HIV Day, we take the opportunity to shine a light on this vulnerability, allowing us to develop more effective prevention methods. One vulnerability is the incidence of domestic and sexual violence many women face over their lifetimes. While men and boys can also experience this violence, women are much more likely to (particularly sexual violence). What does this mean in terms of HIV infections? Women who are in abusive relationships may have a difficult time negotiating condom use or safer sexual practices; and they may not always be able to negotiate consensual sex. Women who have experienced/are experiencing domestic and sexual violence are more likely to abuse drugs/alcohol, making them more susceptible to the risky behaviors that increase their risk of HIV infection. And in a vicious cycle, it’s been found that as women in abusive relationships are at a higher risk of contracting any STI, including HIV, those women living with HIV are also more likely to experience domestic violence.  And HIV+ women who are experiencing abuse have more health problems (such as depression) and a more difficult time managing their status than their counterparts who are not experiencing such violence.  


There are many effective strategies we can take to reduce these risk factors for women, including providing children and adolescents comprehensive, medically-accurate sex education that addresses consent and domestic/sexual violence. We also need to change our cultural norms that allow sexist and misogynistic violence to go unchallenged; and we need to hold abusers accountable for their actions. And in North Carolina, we can also expand Medicaid as an effective strategy in reducing risk. Not only will this provide women increased access to health care, HIV testing and treatment, and mental health services, but increasing access to our health care system can be an effective tool in preventing domestic violence.  35 years into this epidemic, we need to use every tool we have as we move closer to our goal of raising an AIDS-free generation.

- Tara Romano is the President of NC Women United


Monday, February 22, 2016

NC AIDS Action Network supports non-discrimination

We've written on our blog in the past about the intersection of (gay) marriage, HIV stigma, and LGBTQ rights. I'm reminded of how our issues intersect today as the Charlotte City Council prepares to debate and vote on proposed fully-inclusive non-discrimination protections for LGBTQ citizens. As the largest city in North Carolina, Charlotte sets a tone for the rest of the state, and we're hopeful that these ordinances will pass tonight. Mecklenburg County has the highest rate of HIV in the state, and we know residents struggling with an HIV diagnosis may also be struggling with their own understanding of their gender identity or sexual orientation. 

Our movement owes a note of thanks and appreciation to the many organizations who've been leaders on this issue, including our coalition partners Equality NC, MeckPAC, the Human Rights Campaign, and ACLU of NC. If you are a Charlotte resident and support the ordinance, you can attend the city council meeting tonight at 6:30 PM at 600 East Fourth Street. Wear blue in support of non-discrimination, and show up early if you want a seat. We'll be live-tweeting tonight's meeting. Earlier today I wrote the City Council the e-mail below asking them for their support of tonight's ordinance. Let's hope they do the right thing tonight. 

Dear Mayor Roberts and the Charlotte City Council, 

I know you've received a lot of messages about the non-discrimination ordinance you are voting on this evening, so I'll keep my comments brief. Our organization wrote you last year requesting that you pass the ordinances proposed at that time. On behalf of our statewide membership, including over 2,000 residents of Charlotte, I'm making that same request today.

Approximately half of all people living with HIV and AIDS in North Carolina are gay, bisexual, or transgender, and HIV stigma and homophobia are closely linked. They reinforce each other, and prevent individuals from being their true selves and accessing healthcare, employment, and basic accommodations. Not everyone in our communities has legal protection against discrimination, and you can take one small step to change that tonight. 

Please be in touch if I can answer any questions or provide information before your vote this evening. 

All the best, 

Lee Storrow 
Executive Director 
North Carolina AIDS Action Network