Ryan White. Real Lives. Meet Nick Nicholas

| March 12, 2015 | 0 Comments
The death rate among adults with an HIV diagnosis in Mississippi is almost twice the national average. The State of Mississippi has not yet expanded Medicaid under the Affordable Care Act.  As a result, an estimated 1,400 of the lowest-income people with HIV have been left out of coverage available in other states.  They must rely on Ryan White funding for crucial medical care and other supportive services.  In 2011, approximately 4,015 Mississippi residents received services through the Ryan White program.

Nick Nicholas cutNick Nicholas
Jackson, MS

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 Care Act.

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Co-sponsors: AIDS United, Southern AIDS Strategy Initiative, Southern AIDS Coalition, Center for Health Law and Policy Innovation at Harvard Law School, 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.


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Category: Ryan White. Real Lives.

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