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In 1985, my uncle was diagnosed with HIV. This was well before there were any treatments for the disease — it was just four years after the first case was reported in the United States and two years before researchers would discover the first treatment.
Although my uncle had health insurance, his access to care was extremely limited, and he struggled to stay healthy. As the disease progressed, he eventually moved to be closer to my family, but every time he got sick, his insurance required him to be taken in an ambulance to a hospital that was more than 500 miles away but still in his network.
I can remember the tremendous burden this had on him and how he’d avoid and dread getting care. Unfortunately, the ambulance rides became more and more frequent, and in 1988, he died.
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This story isn’t unique, and in my time working as the executive director of the Southern AIDS Coalition, I’ve heard hundreds of stories just like this. In the 1980s and 1990s, the number of Americans dying of AIDS was rising steadily, and there were extremely limited treatment options. And in 1994 — for the first time — AIDS was the leading cause of death for all Americans. At the peak of the country’s epidemic in 1995, an estimated 50,000 people died from AIDS.
Today, thanks to advances in medicine, smart public policy and prevention and outreach efforts, people living with HIV are able to live long, healthy lives. Fewer than 7,000 people die each year from HIV; there are multiple treatment options that enable people to find the one that’s right for them, and new transmissions are on the decline.
In fact, our success in treating HIV, and extending the lives of those living with the disease, means that the median age of those living with HIV in the United States has been trending older. Today, almost half of all people living with HIV in the United States are 50 or older.
Key to this progress has been efforts that allow people who are newly diagnosed with HIV to quickly access treatment that their doctor thinks is best for them. This not only keeps them healthy but suppresses the HIV virus, making it impossible to transmit to others. It has also — finally — put us on the path to ending the country’s HIV epidemic.
Still, as a leading HIV advocacy organization in the South, we know all too well that there is important work to be done. The South is home to more than half of the undiagnosed infections in the United States. In 2015, out of the 10 states with the highest rates of new HIV diagnoses, eight were in the South. In addition, fewer Southerners living with HIV receive timely medical care or treatment, and even fewer have their virus suppressed.
The Southern AIDS Coalition is working to address the dire need here in the South and prevent new transmissions, but a new Trump administration proposal would endanger our progress. Worse, it could also reignite the nation’s HIV epidemic.
The proposed rule would change Medicare Part D’s protected classes, which have improved and saved millions of lives by allowing people living with HIV to have direct access to the best medicines for them. President Donald Trump’s rule would change the protected classes to hand tremendous power to insurance companies, allowing them to restrict people’s access to HIV medicines that their doctor thinks is best.
This is a huge problem. Central to ending the HIV epidemic is preventing new transmissions, and data shows the best way to do that is allowing people to quickly access the right medicine that keeps their virus in check, making it impossible to spread to others.
Trump’s proposed rule puts that in jeopardy by removing restrictions against “step therapy,” meaning insurers would be able to require Medicare enrollees living with HIV to prove less-effective medications don’t work before agreeing to cover more-effective, but more expensive treatments. Trump argues that this is an effort to control costs, which we agree is a worthy issue, but reforming cost on the back of people living with HIV is the wrong way to solve the problem.
More than 700,000 people with AIDS have died since the beginning of the epidemic. We’ve seen the height of the HIV epidemic. We can’t go back.
And while a lot has changed since my uncle died in 1988, progress still depends on people’s ability to get access to care. That’s why we shouldn’t change policies that are working. If we want to end our country’s epidemic, we need Congress to protect Medicare Part D for people living with HIV.
Nic Carlisle is the executive director of the Southern AIDS Coalition, an organization focused on ending the HIV epidemic in the South, and previously, he served on the Presidential Advisory Council on HIV/AIDS.
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