HIV has been a stubborn disease to tackle in Alabama.

Despite the medical advances and networks of care, the rate of new infections every year in Alabama has barely budged over the last two decades, according to the Alabama Department of Public Health. In 2017, there were 657 new diagnoses. For the previous 10 years, the number varied only slightly, from a low of 634 in 2013 to a high of 718 in 2008.

And those unflinching numbers – particularly in rural areas – are the reason Alabama is now being targeted by a national health initiative.

A diagnosis of human immunodeficiency virus, or HIV, is not the death sentence it was when the illness surfaced in the summer of 1981. People living with the virus can take one pill a day and expect to stay healthy and live about as long as those without it.

But in Alabama, almost half of the roughly 14,000 people who know they have the virus don’t receive the therapy that can contain it, protect their immune systems, and prevent infecting others.

“I think what bothers us now is that every time we see a new infection, we just know that was completely preventable,” State Health Officer Dr. Scott Harris said. “We have the medication out there not only to treat people who are infected with HIV so that they can’t transmit it. But we also have preventative medication for people who aren’t infected with HIV but who might be at risk.”

Harris is an infectious disease doctor who treated HIV patients for about 20 years before becoming state health officer.

The Centers for Disease Control estimates that about 15 percent of those with HIV don’t know it, which would be about 2,500 people in Alabama.

The problems of undiagnosed and untreated HIV have gotten more attention this year. President Trump announced in February an initiative to end the epidemic. It includes goals to reduce infections by 75 percent in five years and by at least 90 percent in 10 years.

The U.S. Department of Health and Human Services says progress against the epidemic has stalled, with about 40,000 new diagnoses every year. Two-thirds of those diagnosed in 2017 were gay and bisexual men. Forty-three percent of those diagnosed were African-Americans, disproportionate to their 13 percent share of the population.

About 1.1 million people in the nation are living with HIV. HIV has claimed more than 700,000 lives in the United States since 1981.

Trump’s budget request includes $291 million to support the initiative. Harris said the money would boost efforts by organizations already fighting the epidemic and could promote more collaboration and partnerships.

The initiative targets 48 counties, plus Washington, D.C., and San Juan, Puerto Rico, that combined had more than half the new HIV infections every year, plus seven states with high rates of infection in rural areas – Alabama, Arkansas, Kentucky, Mississippi, Missouri, Oklahoma and South Carolina.

Harris believes HIV spreads in rural areas partly because people are secretive about being at risk.

“Some of the people who are at risk for HIV disease include, for example, men who have sex with men,” Harris said. “And that’s not a lifestyle that many people in rural areas are willing to be open about or able to be open about. So you just have folks who are afraid and closeted in some cases. And they’re not really seeking out help and they’re not necessarily even seeking out being tested because of the stigma associated with it.”

That word, stigma, comes up often when talking to those trying to stamp out HIV.

Tony Christon-Walker, director of prevention and community partnerships for AIDS Alabama, said HIV still carries a shame that puts secrecy ahead of good health.

“The problem with HIV is the stigma is so bad that people don’t even want to get tested,” Christon-Walker said. “By the time we get to the point where we’re actually in their faces, they’ll say that they don’t want to get tested or they’ve already been tested or they don’t think they need to get tested because they’re not gay. They just come up with any reason not to.”

Christon-Walker’s job is to break through the stigma and make testing easy and convenient. On the last Saturday in July, he helped host an event at Smithfield Community Center in Birmingham offering $10 gift certificates to Walmart to people who took an HIV test. One hundred people tested.

AIDS Alabama also offers free, confidential testing at two offices in Birmingham, with results available in 20 minutes. A finger-prick initial screening returns results in 60 seconds.

“We have a pretty decent social media strategy that we use that allow people to get confidential testing,” Christon-Walker said. “We’ll even come to your house and test you if you don’t want to come to an event or our offices.”

Other organizations and clinics offer similar services. Their efforts can make a lifetime of difference.

In Alabama, almost two-thirds of those living with HIV are African-Americans.

Harris said the main reasons overlap with the reasons for the high rate in rural areas.

“It’s hard to know for sure because every case is different. But I do think that you have significant stigma in that community,” Harris said.

“It’s an overgeneralization, but many times you have African-American folks, particularly in rural communities, who are in extremely religious environments and there’s just a lot of stigma. And they can’t really come out and talk about their problems. And they may put themselves at risk because they are just too scared to try to find out how to protect themselves.”

Harris said blacks in Alabama are more likely to be uninsured and lack access to resources and tools to protect themselves.

A key example is a preventative medication for those who don’t have HIV but are at high risk. It’s called a pre-exposure prophylaxis, or PrEP, and carries the brand name Truvada. If taken daily, it reduces the risk of getting HIV from sex by 99 percent, according to the Centers for Disease Control. The CDC recommends it for people who are HIV-negative and in a sexual relationship with an HIV-positive partner, as well as for certain others who have unprotected sex with partners whose HIV status is unknown.

“Again, there’s a lot of stigma among certain groups of people about taking that medication or talking about that medication,” Harris said. “And we’re working very hard to get the word out to folks who may be at risk that they can prevent infection just by taking one pill a day.”

Truvada is available by prescription but is not covered by the drug assistance plan that pays for the drugs to treat people already living with HIV. Harris said that can make it challenging for people to obtain the medication if they don’t have health insurance.

Programs are available to make PrEP available and more affordable for the uninsured. That doesn’t necessarily mean everyone will take advantage of them.

Neice Danzey, manager of community education for Medical Advocacy & Outreach, a Montgomery-based nonprofit that offers HIV testing and care in 28 counties, said people are reluctant to accept that they need the protection that PrEP offers.

“A lot of people, if you say it’s for someone that’s a high risk for HIV, they’re definitely going to say, ‘Oh, that’s not me. I’m not out there like that,’” Danzey said. “So, we’re just trying to change the way that we are introducing PrEP to them, so they know it’s not just for a person living a certain lifestyle. It’s for anyone having unprotected sex.”

Condoms are still recommended for those who use PrEP because they provide additional protection and guard against other sexually transmitted diseases like gonorrhea and chlamydia.

Unchecked, HIV multiplies rapidly and destroys the cells that fight infections in the body, eventually developing into AIDS, the most advanced stage.

Medical breakthroughs in the mid-1990s, including key findings by researchers at the UAB Center for Aids Research, led to the development of antiretroviral drugs that stop the virus and contain it to undetectable levels in the blood.

There’s no cure. But the condition is manageable for those that stick with the therapy.

More than 60 clinics across the state offer medical care and help in obtaining the life-saving medications. The clinics are supported by the federal Ryan White HIV/AIDS Program and serve low-income, uninsured and under-insured patients regardless of their ability to pay.

“There’s no reason for anyone to not get on medication, other than fear of disclosure,” said Kathie Hiers, CEO of AIDS Alabama. “That’s the main reason that people don’t get on it.”

In addition to the drug assistance program that helps people get their medicine, the Ryan White program can help those living with HIV and their families obtain health insurance so they can receive comprehensive care.

Preliminary data for 2018 from the Department of Public Health showed that 56 percent of the 13,256 people diagnosed with HIV in Alabama were retained in continuous care, meaning they were getting the therapy they needed. The percentage is almost the same, 54 percent, for those who are diagnosed and have a suppressed viral load, the goal of therapy.

The numbers show that those who commit to regular care do well. But commitment comes hard for some.

“We have a lot of people, whenever they find out they’re diagnosed with HIV, they’re ready to just give up,” said Danzey, the community education manager at Medical Advocacy & Outreach. “They don’t want to take the medicine.”

Danzey said it’s important to tell those newly diagnosed patients that their illness will affect others, too.

“You don’t want to leave your children,” Danzey said. “You don’t want to leave your loved ones. So, we want you to take this medication to prolong your life. We try to encourage them and let them know, this is not the end. HIV is not a death sentence.”

Thomas Stephens and Neice Danzey of Medical Advocacy & Outreach in Montgomery, a nonprofit that provides HIV testing and patient care for residents of 28 counties. (Mike Cason/mcason@al.com)

Dr. Aadia Rana, an associate professor in infectious diseases at the UAB School of Medicine, said the stigma and discrimination against those with HIV, poverty, and racial discrimination are among the barriers to people receiving regular care.

“The things that impact poor outcomes, whether it’s in diabetes or heart disease, also impact poor outcomes in HIV, such as poverty, lack of housing, living in an unstable environment,” Rana said.

“Then to add to that some of the same issues that put people at risk for HIV certainly persist after their diagnosis. There may be challenges with mental health issues, or substance issues. And that can persist and also make their engagement with care sort of a lower priority for them.”

AIDS Alabama CEO Hiers has been engaged in the battle against HIV from the start of the epidemic. In the early 1980s, she helped start an AIDS charity in Mobile after a friend’s death. The medical science and care have advanced far since those grim early years of the epidemic. Hiers said colleagues working to stop HIV in other parts of the country see an end in sight.

“But I tell them you’re never going to end this, as transient as people are, if we don’t so something about the South,” Hiers said.

In 2017, the number of new cases per 100,000 people were almost twice as high in the South as other regions: South, 16.1; Northeast, 10.6; West, 9.4; Midwest, 7.4.

Alabama and all its neighboring states are among the 14 states that have not expanded their Medicaid programs, an option under the Affordable Care Act that is supported mostly with federal money. Medicaid expansion is intended to cover low-income working families who don’t have health insurance.

Health officials in Louisiana have attributed a decline in new HIV cases partly to Medicaid expansion, which Louisiana started in 2016. Rana said that should send a message to Alabama and other southern states.

“Any plan to end the epidemic in this state will require the expansion of Medicaid,” Rana said. “That will allow the most vulnerable population access to prevention services and comprehensive treatment services, as well.”

The number of deaths of people with HIV in Alabama, like the number of new infections, has held fairly steady over two decades, according to the Department of Public Health. From 1997 to 2017, there were at least 200 deaths every year, with a high of 284 (in 2001 and 2007), and a low of 202 (in 2017). The numbers include deaths from any cause among people with HIV.

Hiers said Alabama needs more comprehensive sex education in public school to make sure that students understand how HIV and other sexually transmitted diseases are transmitted.

“I would really like to see HIV move from the moral to the medical arena,” Hiers said. “If we would quit making people feel so bad about being gay. In a lot of cases these young men are having to hide the fact that they’re gay. And so, they might have a boyfriend and a girlfriend. And so, it’s spreading to heterosexual women that way.”

Christon-Walker knows both from his job and personal experience how the HIV stigma affects behavior. He’s lived with an HIV diagnosis for years. He doesn’t hide that but there was a time when he did.

“I would drive to Montgomery to go to the doctor because I didn’t want anybody here to find out just because I was ashamed,” Christon-Walker said. “Now I look back and realize how stupid that was. But you know, you live and learn, which is why I live my life as an openly HIV-positive person because I need people to realize that this isn’t the end of the world. You can live, you can thrive, you can do whatever you did beforehand.”

Christon-Walker said people still leave their home cities for treatment because they’re ashamed. Medical and scientific advances have not dispelled all the ignorance and misplaced fear about HIV.

According to the National Institutes of Health, HIV is spread through contact with the blood, semen, pre-seminal fluid, vaginal fluids, rectal fluids, and breast milk of a person with HIV. It is mainly spread through anal or vaginal sex or sharing drug injection needles with someone who has the virus.

“I’ve seen people as recently as last month who say they have to eat of out paper plates when they go to their family house to eat,” Christon-Walker said.

Changing attitudes about HIV can start with steps as simple as changing the way people talk about the illness.

“Referring to a person as somebody who’s HIV-infected sounds a lot worse than saying somebody who’s living with HIV,” Christon-Walker said. “It just the way that we use terminology and the way that we use words. Being able to say to people, ‘OK, I understand you have HIV. Tell me what that’s like.’ And then, not treating them like they’re lepers.”