Ryan White. Real Lives.

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Ryan White. Real Lives. is a national campaign presenting narratives on the importance of the Ryan White HIV/AIDS Program among communities affected by HIV, particularly states in the Deep South that have not expanded Medicaid.

The campaign shares the stories of individuals and families around the country and from all walks of life who are living with HIV. These narratives highlight the personal impact of Ryan White services and the ongoing need for the program as a key part of our response to HIV.

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Meet…Elizabeth Shepard, South Carolina

Elizabeth-Shepherd-PictureThe Ryan White Program saved my life. In 1996, I was gang raped in Charleston. I learned I was HIV positive one year after. The Lowcountry AIDS Services clinic, which was funded by Ryan White, helped me with doctor’s appointments and helped me get on ADAP to get all the medication that I needed. In addition to helping me with HIV medication and doctor’s appointments, they also referred me to free mental health services to help me come to terms with what had happened to me. Lowcountry was wonderful to me.
Ryan White gave me an opportunity to create a life for myself, and I have taken advantage of that opportunity. After the rape, I was incredibly beat down physically. The social workers at Lowcountry were right there for me throughout everything—every time I got down, they picked me up. I was able to get clean in 2001, and I returned to school for a master’s degree in health education. I graduated with a 3.74 GPA, even though I experienced four cerebral aneurysms during my time in school. I now work with special needs children, which I love, and I am a Certified Tobacco Treatment Prevention Specialist. I also am involved in HIV advocacy, and I am on the board of the ADAP Advocacy Association. I am happily married to a wonderful retired Naval Officer. I now am insured through his plan, but I was very worried about how the transition from ADAP and Ryan White funded programs to his insurance would go, because it is so important to stay on HIV medication consistently. South Carolina ADAP called Tricare, my husband’s insurance plan, and helped coordinate the transition, which worked seamlessly.
Ryan White gave me the chance to change from an emotionally and physically wounded person into the person I am today. It gave me the opportunity to take my life back after my rape. I am so proud of how far I have come, and I am so grateful for Ryan White for helping me get there. I know so many others who have been helped by Ryan White as well. People like me need Ryan White. I would tell everyone in Washington that keeping the Ryan White program is key to giving people a chance in life, and I’m sure they would sleep well at night knowing they are allowing people like me to create fulfilling, happy lives for themselves and be able to “pay it forward” by helping others.

Read other stories of people impacted by the Ryan White HIV/AIDS Program


Meet…Nick Nicholas, Mississippi

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Quite simply, I am alive only because of Ryan White. I have been on disability since 2008 and on Medicare since 2009. For the first two months of each year I had to spend 45% of my disability income on my medications—drugs that cost $1,000-$2,000 per month each. In the third month, I fell into the dreaded Medicare “coverage gap,” which means the insurance company provides no coverage for my medications whatsoever. The cost of the medications was more than 150% of my monthly income.
The Ryan White program stepped in to cover the costs of my medications during the coverage gap. Otherwise I would have had to stop taking the medications, which would lead to developing drug-resistant HIV and increased infectiousness. Mississippi’s Ryan White program now helps cover the high copays during the first two months before the coverage gap comes into play. Now I actually can pay rent AND eat in the months of January and February!
Ryan White preserves my health when there are gaps in Medicare coverage. And there are plenty of gaps in HIV care through Medicare. One big gap is the lack of dental care coverage. Ryan White makes dental care possible, and that’s a very important aspect of HIV care that’s often overlooked. My disease was not detected until it had reached an advanced stage. I have suffered irreversible neurocognitive damage, and I have been diagnosed with HIV-associated dementia. Although the damage cannot be reversed, the HIV antiretrovirals are the only treatment that can prevent further deterioration. The medications lets me function, albeit at a slower, reduced level from where I was before.
Notwithstanding my dementia, I was able to get a bachelor’s degree in social work, graduating at the top of my class, and then a master’s degree at the top graduate social work program in the country (Washington University in St. Louis). My plan is to change careers from my previous work in computer science and Internet email security. Being able to get Ryan White services is the only thing that will make it possible for me to get off disability and back in the workforce.

Read other stories of people impacted by the Ryan White HIV/AIDS Program


Meet…Edwin Brandon, Tennessee

Edwin-Brandon RW storiesI’m a long-term survivor— I’ve been living with HIV for 31 years. I used to live in Memphis, but am now in rural Tennessee, near the borders of Alabama and Mississippi. Being way out in the country means that I need to travel 140 miles round-trip to see my primary care doctor. I would never be able to afford to do this without the transportation assistance I get from Ryan White.
I consider myself lucky to have both Medicare and TennCare (Medicaid), but there are things that these programs don’t cover, like dental care and nutrition services. I had problems with my teeth—the enamel came off after I had to have chemo—and had thrush for years, until I was able to see a dentist through the Ryan White Program. He’s been able to keep the thrush away and help me keep my teeth. I do get food stamps, but they got cut from $60 to $16 a month, which isn’t enough to pay for what I need. Fortunately, Ryan White can help with nutritional counseling and food support. Getting this help from Ryan White has kept me healthy enough to be able to volunteer with the Tennessee Association of People with AIDS and Tennessee Legal Services. I help with intake for clients, and do public speaking about HIV prevention.
As I’m getting older, I have more doctor appointments, for both HIV and the secondary problems that come up with age (like with my liver and kidneys). I would never be able to make these appointments if not for Ryan White. It’s not just me and my doctor involved with my care, but also Ryan White and my support system. It’s like a puzzle — when all those pieces are put together, I can stay alive and be a productive member of society.

Read other stories of people impacted by the Ryan White HIV/AIDS Program


Meet…Jean B., Florida

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When I was diagnosed with HIV, I was overwhelmed. I live in a rural area where the stigma meant I was going to have to find a provider outside of my community for my safety. I didn’t know where to start. I can tell you that the case management aspect of the program has played a huge role in my health. The Ryan White case manager was there to guide me through the paperwork and the healthcare and Medicaid systems so I’d get the care I needed with a provider outside my rural county.
I drive nearly 120 miles round trip to get to my doctor’s appointments. The gas cards provided to me through the Ryan White program have helped tremendously, reducing the financial struggle for my husband and me.
Since being diagnosed and in Ryan White Program, I have had access to critical immunizations that until recently were not covered through Medicaid. These immunizations reduce my chances of hospitalization or other complications due to my positive status.
I can’t imagine what sort of services would fall through the cracks if the Ryan White program were to no longer exist. Losing access to dental and mental health services for positive individuals would be dire. I know that many of my peers depend on these services as part of their holistic care. Ryan White services are critical to my health, and to the health of thousands of other people living with HIV in the state of Florida.

Read other stories of people impacted by the Ryan White HIV/AIDS Program


Meet…Fenicia Rosario, South Carolina

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When I was diagnosed with HIV in 2004, after a year of being sick, I thought it was a death sentence. I wasn’t informed about how you could get HIV or what would happen if you got it. Fortunately, a friend brought me to support groups, and I learned more about how I could survive with this virus.
I am now on HIV medications, which I get with help from the AIDS Drug Assistance Program (ADAP) in South Carolina. I do have Medicaid and Medicare, but without Ryan White I wouldn’t be able to afford the copays for my meds. Medicaid and Ryan White go together and work better together. I also can get dental care, vision care, mental health services and help with transportation through Ryan White. If I couldn’t get help from Ryan White, I wouldn’t get the proper health care that I need. I think I’d be frustrated, and probably sick.
Instead, my health is great generally—I am one of the fortunate ones. With feeling good, I’m able to be involved, do public speaking, advocate and educate about HIV. When I moved to Greenville in 2009 to be closer to my son and his wife, I was on the news to educate about HIV. Now I get asked to speak at churches, and I hope to be able to speak to young people in schools. I’m planning to start a group for women, to help inform them. I’m always passionate in what I do, and my motto is “speak up and speak out.”

Read other stories of people impacted by the Ryan White HIV/AIDS Program


Meet…Elisha, Oklahoma

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I am scared to imagine what my life would be like without the Ryan White Program.
I was raised in a small town in Alabama by a family that is heavily involved in the Christian ministry. As a result, my upbringing had a tremendous emphasis on community involvement, academic excellence and social service. These values led me to the Marine Corps after high school, where I was lucky enough to play the piano for the Marine Corps band. I loved traveling from city to city and playing music with the Marine Corps band. It allowed me an avenue to provide joy and inspiration to those who were serving my country. It was an opportunity I was very blessed to have.
During the end of my time in the Marine Corps, I was sexually assaulted during a service trip to New Orleans. Shortly afterwards I was diagnosed as HIV-positive.
Because I had exited the Marine Corps before my diagnosis, the Marine Corps couldn’t help me to pay for the cost of my medication. I had no job, no insurance and no idea as to how I was going to improve my situation. That is when I found out about Ryan White funding from another HIV patient.
Ryan White has been able to help me pay for a comprehensive insurance plan that covers the cost of all of my medication and hospital visits. Because of the incredibly high cost of HIV treatment, there is no way I would have been able to afford this insurance plan on my own. The help I get from Ryan White has allowed me to rebuild my life. I am now working full-time, spend time volunteering with homeless people in my community and enjoy each and every day with my fiancée. I’m in the best health I’ve been in since I’ve been out of the Marine Corps. It is a quality of life I could have never imagined at the time of my diagnosis. My family and I consider the Ryan White Program as a blessing.

Read other stories of people impacted by the Ryan White HIV/AIDS Program


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Co-sponsors: AIDS United, Southern AIDS Strategy Initiative, Southern AIDS Coalition, Center for Health Law and Policy Innovation, HIVHealthReform.org, HIV Prevention Justice Alliance, and the AIDS Foundation of Chicago.

This campaign has been made possible by the generous support of the Elton John AIDS Foundation.