Friday, July 8, 2016

PrEP Experience

A few years ago, I had an HIV scare. At the time, I knew nothing about HIV or the ways that it can be transmitted. Shortly after this scare I set up a time to meet with a health educator at my local testing site to discuss prevention options. Working together we created a plan that was simple yet effective. One of the options that we discussed was pre-exposure prophylaxis or PrEP.

This once a day medication has helped expand the prevention options for gay and bisexual men. The pill helps to prevent HIV infection by at least 90 percent when taken daily and has an even higher rate of protection when combined with condom use. Current predictions from the CDC estimate that 1 in every 4 gay and bisexual men could benefit from use of PrEP.  

I decided to begin using PrEP nine months ago when I came to UNC. PrEP has been a good addition to the ways in which I protect myself against HIV. Initially, issues around availability, cost, and adherence made PrEP seem like an unlikely option. However, these concerns were addressed using online and local tools and resources available in North Carolina.   

PrEP is widely available throughout the Triangle area. This interactive map, created through UNC’s School of Medicine, helps both providers and patients identify PrEP providers throughout the state. On campus, I was able to simply talk with my primary care provider at the Student Health Center about my sexual health and interest in PrEP. My provider ordered a couple of blood tests, wrote me a prescription and sent me on my way. For students with insurance through UNC, the prescription is filled by a specialty pharmacy that delivers the medication directly to your home.

I initially thought cost would be one of the largest barriers, but found that PrEP payment assistance programs are available and may help to cover the cost of the medication. These programs are designed to help make PrEP more affordable and accessible for people with and without insurance. Originally, the prescription would have cost $30 with student insurance, but after co-pay assistance program was applied, the medication was free.

Lastly, daily adherence to this medication is key to its effectiveness. Users must take the pill at a similar time each day for successful use. I have found it helpful to set simple reminders or use apps that signal when to take my medication.

The introduction of PrEP has revolutionized the options that gay and bisexual men have to protect themselves against HIV. I share my experience using PrEP as a way to start a conversation on how to connect to resources and craft your own HIV prevention plan using the resources in your community.

-Ryan Drab, NCAAN intern

Friday, July 1, 2016

Thrilling Week for HIV Advocacy in NC!

The General Assembly is wrapping up their work today, and it’s anticipated that they’ll finish this year’s legislative session over the weekend.
In many ways, this has been a thrilling week to do HIV/AIDS advocacy in our state. We launched a campaign last December to support premium assistance for AIDS Drug Assistance Program patients in North Carolina. You showed up to support this campaign in a big way. Advocates spoke out in the media, met with legislators to educate them about this topic, and we packed the Senate gallery during HIV/AIDS Advocacy Day with dozens of community members from across the state speaking up for increased access to health insurance.
Our hard work paid off. The budget passed this week includes a provision authorizing ADAP to create a health insurance premium assistance program! On top of that, the legislature passed legislation legalizing syringe exchange programs in North Carolina. The governor is expected to sign both bills, and these measures are important tools our state needs to end AIDS and will save lives.
Even with these significant victories, I’ve been reminded of the challenges still ahead to make sure everyone in our community is afforded dignity and respect. The syringe exchange language was added at the last minute to a bill limiting public access to police body cameras opposed by many of our partners working in social justice. Legislative leadership has failed to repeal HB2, and is still discussing a proposed fix that would further stigmatize and shame our trans friends and family. Even in light of big victories, we must recommit ourselves to advocating for our entire community.
As we prepare for future efforts, I hope you’ll plan to join us later this fall at our annual HIV/AIDS Advocacy Conference hosted with the North Carolina Harm Reduction Coalition. This year’s conference will be September 10th at Winston-Salem State University. Be on the lookout for more information in the coming weeks. We’ve got some exciting things in store for this year, including a pre-conference the day before focused on PrEP access, dynamic workshops, and the opportunity to reconnect with movement leaders from across our state.
Our community is stronger when we work together. I can’t wait to see what’s next.

Thursday, June 30, 2016

Stonewall, 1981, HB2, and Orlando: Stories of Resilience

The month of June is celebrated as lesbian, gay, bisexual, and transgender (LGBT) pride month. The celebration honors the June 28th, 1969 Stonewall riots in New York, which is regarded by some as the beginning of the modern LGBT movement. The month provides opportunity to recognize and reflect on the progress that our communities have made, and to recommit ourselves to overcoming current challenges we face.
The recent attacks at Pulse Nightclub in Orlando have raised concerns and questions around safety and progress for many LGBT people across the United States. As we individually and collectively process this tragedy, I have found it helpful to reflect on the resiliency and resolve the LGBT community has shown when faced with unbelievable challenges in the past.
June 5th marked the 35th anniversary of the 1981 CDC report identifying what would later become known as HIV. It is currently estimated that around 1.2 million Americans are living with HIV, with around 36,300 of those being North Carolinians impacted by the virus. At the onset of the epidemic, our communities organized, responded and cared for those affected by HIV. This response organically grew out of our own resilience and continues to move the conversation forward around HIV.
Currently, LGBT North Carolinians face the challenge of House Bill 2 (HB2), a piece of legislation severely limiting transgender individuals access to bathrooms, in addition to many other civil rights violations outlined in the bill. National and local organizations, such as Southerners on New Ground (SONG), Equality North Carolina, and American Civil Liberties Union (ACLU) have led our communities in the fight against HB2.  
This organizing is important, yet it is the everyday resiliency and ability for LGBT North Carolinians to exist and live full lives within our state, despite the current legislations attempts to impede our ability to do so, which continues to inspire me.

On Saturday, June 25th, NCAAN participated in the local pride celebration in Salisbury, NC. This event was not large or flashy like those in major cities, but rather was homegrown and intimate with local community members celebrating their love and appreciation for one another. Jennifer, a community member from Concord, NC, talked to me about the importance of her local LGBT affirming church congregation. She described feeling lost and isolated before joining her current bible study, and described how this space provides safety and affirmation simply through its existence.

Jennifer’s words are particularly important as our communities continue to work through what happened in Orlando. Her words provide yet another example of the importance of our individual and collective resilience as we continue our fight against the challenges we face.

- Ryan Drab, NCAAN intern

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.