It’s been two decades since we established effective treatment against HIV, rendering what was nearly always a fatal infection to a chronic, manageable condition.

I remember one of the first AIDS patients I met as a medical student in the mid-90s: Harry, a young man losing his sight from an opportunistic infection called CMV retinitis. We had only one drug we could give him to try to stop him from going blind.

Ganciclovir was horrible. Given intravenously, it burned at the infusion site, made him severely nauseous, and caused his already-low blood count to fall. On top of all that, it didn’t work very well.

Days after we discharged him from the hospital, Harry was readmitted with pneumonia caused by Pneumocystisand died. He was 32 years old.

In those years, we saw many patients in the hospital with complications from HIV. They had unusual malignancies like Kaposi’s sarcoma, and other opportunistic infections like toxoplasmosis that we never see in patients with intact immune systems.

In extreme cases, patients simply wasted away, physically and mentally, from AIDS.

Then protease inhibitors were introduced in 1996, and almost overnight the death rate from AIDS plummeted. Now people could live with HIV rather than die from it. Patients with AIDS disappeared from our teaching hospital wards. HIV had become an “outpatient problem.”

Antiretroviral therapy keeps the viral load suppressed in patients infected with HIV. This means not only that they stay healthy, but also are much less likely to transmit the virus to others.

Fortunately, the cocktail of three different medications taken to keep HIV in check, which include a protease inhibitor like darunavir and the newer integrase inhibitors like dolutegravir, have become better tolerated over the years. Today the life expectancy for someone who is HIV-positive is about the same as for someone without HIV — as long as they are able to stay on their medication.

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A woman holds the 14 different AIDS medications that she takes three times a day. Antiretroviral drugs have turned HIV from a death sentence into a chronic illness.

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For many, though, there are still significant barriers to care that make the not-so-simple act of adhering to a medication regimen near impossible.

Chief among them is access to care. Especially in rural areas, it remains difficult to find practitioners up to date with the latest information in HIV care. In addition, stigma associated with HIV diagnosis and treatment continues to be a formidable barrier to getting care, regardless of location.

Carmel was a patient I cared for years after Harry. She’d been abused as a youngster, which understandably put her in a dark place emotionally. She was isolated from her family, and struggled with drug addiction over the years.

Her HIV eventually progressed to full-blown AIDS because of many fits and starts with her antiretroviral treatment. When I met her, she’d lost her ability to walk due to an opportunistic infection called cryptococcal meningitis.

After three years with numerous hospital admissions, Carmel died. To me, it seemed especially tragic because I knew we had the medical tools to nurse her toward health. But we were unable to cross the psychosocial chasm that Carmel lived beyond to effectively engage her in care.

Even with effective medications, only half of the 1.1 million Americans living with HIV have an undetectable viral load. But this represents progress, as does the fact that 85 percent of Americans infected with HIV are aware of their status, according to the Centers for Disease Control and Prevention.

These are all-time highs, but show that there is still work to be done.

It’s worth remembering that strong, sometimes militant advocacy is what pushed us forward in how we diagnose and treat HIV. Scientific, medical, and social progress occurred more rapidly with HIV than with any other condition before it.

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Protestors carry signs at a rally in New York City on October 7, 1995 in New York City. Activists played a key role in speeding research that developed treatments for HIV.

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AIDS activism pushed the research agenda forward, and brought truly holistic care to people diagnosed with HIV. The care model we use for HIV-positive persons is an ideal model for how we could care for everyone—thinking not just about the medical aspects per se, but also about nutrition, medication adherence, transportation, mental health and overall wellbeing.

In Oklahoma, where I practice, the stigma surrounding HIV is still palpable. Fortunately, an organization called Tulsa Cares has blossomed to provide case management and psychosocial and nutritional support to people with HIV and their loved ones. This vastly increases the likelihood that patients will get into treatment and stay with it.

Advocacy for HIV is what led to the dramatic improvements in our ability to care for the illness. On this 30^th anniversary of World AIDS Day, let’s remember what a difference holistic care has made for people with HIV and how amazing it would be if such a model spread to all corners of health care.

John Henning Schumann is an internal medicine doctor and serves as president of the University of Oklahoma’s Tulsa campus. He also hosts Studio Tulsa: Medical Monday on KWGS Public Radio Tulsa. You can follow him on Twitter: @GlassHospital.

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This week, Colorado became the first state to notify families that children who receive health insurance through the Children’s Health Insurance Program are in danger of losing their coverage.

Nearly 9 million children are insured through CHIP, which covers mostly working-class families. The program has bipartisan support in both the House and Senate, but Congress let federal funding for CHIP expire in September.

The National Governor’s Association weighed in Wednesday, urging Congress to reauthorize the program this year because states are starting to run out of money.

In Virginia, Linda Nablo, an official with the Department of Medical Assistance Services, is drafting a letter for parents of the 66,000 Virginia children enrolled in CHIP.

“We’ve never had to do this before,” she says. “How do you write the very best letter saying, ‘Your child might lose coverage, but it’s not certain yet. But in the meantime, these are some things you need to think about.’ “

Children may be able to enroll in Medicaid, get added to a family plan on the Affordable Care Act’s health exchange, or be put on an employer health plan. But the options vary by state and could turn out to be very expensive.

If Congress reauthorizes CHIP funding, states are in the clear. But they can’t bank on it yet, and states have to prepare to shut down if the funding doesn’t come through. Virginia would have to do so on January 31, 2018.

“We’re essentially doing everything we would need to shut down the program at the end of January,” Nablo says. “We’ve got a work group going with all the different components of this agency, and there are many.”

For example, they will need to reprogram their enrollment systems, inform pediatricians and hospitals, and train staff to deal with an onslaught of confused families.

Joan Alker, who runs the Georgetown University Center for Children and Families, says most states need to give families 30 days’ notice.

“But [state officials] are hearing rumors that Congress might get this done in the next couple of weeks and they don’t want to scare families,” she says. “States are really in a bind here, it’s very tough to know what to do.”

Colorado was the first to send out a notice and other states are close behind. There are a handful that are starting to run out of money in December, Alker says, such as Oregon, Minnesota and the District of Columbia.

The exact deadline for when CHIP funding runs out in each in each state is tricky to calculate, because the amount of money they have depends on how fast states spend it — and how much stopgap help the federal government gives them.

Some states are getting creative. Oregon just announced it will spend state money to keep CHIP running, says Alker, “And they’re assuming that Congress will pass it and they’re get reimbursed retroactively. That’s what they’re hoping.”

Texas is set to run out of CHIP funds a lot sooner than was expected just a few months ago. And there’s a big reason for that: Hurricane Harvey, says Laura Guerra-Cardus with the Children’s Defense Fund in Austin.

“Natural disasters are often a way that individuals that never had to rely on programs like Medicaid and CHIP need them for the first time,” she says.

Guerra-Cardus says after Harvey, a lot of new families enrolled in CHIP and there was also a higher demand for services. “When there is such a traumatic event, health care needs also rise. There’s been a lot of post-traumatic stress in children,” she says.

And to help those families out, Texas officials also waived fees they usually have to pay to join CHIP. So, lately there’s been less money coming in and more money going out. Like Virginia, without reauthorization, Texas would have to shutter CHIP by the end of January.

For Amy Ellis in Alpine, Texas, that’s something she’s dreading. “Losing a lot of sleep,” she says. “Still losing a lot of sleep.”

Ellis has an 8-year-old daughter who has been on CHIP since she was born.

She has asthma and allergies. Ellis says health insurance is really important because her family doesn’t make a lot of money. Her daughter’s allergy medicine is expensive.

Ellis lives in rural West Texas, nearly four hours southeast of El Paso and “three hours from the closest city,” she says.

The isolation means that Ellis doesn’t have a lot of options other than CHIP, she says. One would be enrolling her daughter in the insurance plan she and her husband have through the Affordable Care Act marketplace, but Ellis says that would be expensive.

“It would cost $300 to $400 a month for us to add her to our plan, which would be a huge chunk of our income,” she says. “That’s our grocery money and our gas money.”

A lot of families in Texas could find themselves in the same situation if Congress doesn’t act soon, says Guerra-Cardus. “Kids with chronic or special health care needs, this is going to turn their lives absolutely upside down.”

Roughly 450,000 children are covered by CHIP in Texas. Officials say they are asking the federal government to give them money that will keep CHIP alive through February.

But because officials must give families 30 days’ notice if the program will end, families in Texas could get letters right around Christmas that say their children are losing their health insurance.

This story is part of a reporting partnership with NPR, local member stations and Kaiser Health News. Selena Simmons-Duffin is a producer at NPR’s All Things Considered, currently on an exchange with Washington, D.C. member station WAMU.

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