Ron Simmons is president and CEO of Us Helping Us, which started out as a support group in 1985.
D.C. has one of the highest HIV rates in the nation, with nearly 3 percent of residents infected with the virus. But some organizations that help HIV-positive people are struggling to redesign their operations as the Affordable Care Act takes full effect next year. They say while health reform is in many ways good news for people living with HIV, the law could also have some unintended side effects.
After Ron Simmons learned he had HIV in 1989, he started going to a support group: "We had the first support group in the founder's home — I think it was like 22 of us — in his living room," Simmons recalls.
Specifically, it was a group for gay black men who are HIV positive, called Us Helping Us. Simmons found camaraderie, and what was at the time a rare a sense of hope.
"Back in those days HIV-positive people were not supposed to be happy, they were not supposed to have that kind of friendship. And do you know, it got to the point, guys who were HIV-negative began to complain that they were excluded from our support group."
Simmons says it's thanks to that support group he was able to live with HIV for the past 24 years.
"I'm on medication now, but I was able to sustain my immune system until the late '90s when indeed they came up with effective medications."
Over the years, new drugs, and ways of using those drugs, have transformed HIV from a death sentence to a manageable disease. Groups like Us Helping Us have evolved too.
The challenges of small organizations
For the past 20 years, Simmons has been president and CEO of Us Helping Us. It's gone from a support group to providing a range of HIV and AIDS services, from testing and prevention, to mental health, with a full-time staff of 14, and a budget of $1.7 million.
Currently those activities are mostly funded through grants from the Centers for Disease Control and the local health department. But that funding structure will likely be changing with the Affordable Care Act.
"It's going to be a challenging time," says Simmons. "I've already told my staff, the next one to three years are going to be really challenging, and we don't know what Us Helping Us is going to look like when it's all over. So I can't guarantee you that you'll all be here in three years."
Julia Hidalgo, a research professor in the Department of Health Policy at The George Washington University School of Public Health, says a tremendous amount of expertise in HIV and AIDS care could be lost in the coming years.
"There are a number of small agencies that are really scrambling to get ready," says Hildalgo. "They're not entirely sure what they need to do to get ready or who can help them get ready, but they know they're not there yet."
Hidalgo is also a consultant, and she's working with groups like Us Helping Us to figure out how to adapt to the new health care landscape. She says the problem is that some of the grant funding that keeps these community-based organizations afloat could dry up, as the support services they currently offer are shifted to a more coordinated primary care setting. Not necessarily a bad thing, except, Hidalgo says, that some groups fill very specific needs.
"Many of those organizations provide an excellent service to a very specific set of HIV infected folks in the community, such as men who have sex with men, transgender population, racial or ethnic minorities."
The D.C. health department is working to help HIV and AIDS groups redesign. For one thing, the department has offered grants so organizations like Us Helping Us can hire consultants like Hidalgo.
"We need those organizations," says Saul Levin, interim director of the District Department of Health. "They're the people who truly are out in the community, can really reach out the populations that they've taken care of throughout this epidemic. But we all know in the Affordable Care Act, and the changing health care delivery system, that all of us are going to have to change."
Dealing with Medicaid billing
Gregory Pappas, senior deputy director of the HIV/AIDS, Hepatitis, STD and TB Administration within the D.C. Department of Health, says the change may require restructuring some community-based organizations.
"Maybe organizations need to merge, to provide a more comprehensive package of services and be stronger that way," he says. "Maybe organizations need to partner with bigger organizations, not necessarily merge, but be like a subcontractor. So there's a lot of ways organizations can move to be relevant in the new era."
Many groups will also need to dive into the complicated world of Medicaid billing, says Pappas. "What's the challenge for some organizations is figuring out how to get more money, grow your services, serve more people, by being able to bill Medicaid. That's the challenge, figuring out what role you have in the Medicaid environment. That's new."
But that transition could be more difficult than it sounds. Adam Tenner is executive director of Metro TeenAIDS, which provides prevention and other services to young people in D.C.
"I feel like I'm moving on to a second career in health care finance to understand the landscape," says Tenner. "We've looked for many years at becoming a Medicaid provider. It's a not very pretty world inside Medicaid. Reimbursements tend to be low and slow."
He says Metro TeenAIDS is looking at how it can repackage the work it's currently doing. They're also considering expanding in other directions.
"What are the other health issues that fit within how we do our work that are broader than HIV? We provide high quality of services, but what if there's no money to fund it?"
Adjusting to health reform
Some organizations are already shifting focus. Us Helping Us is moving more toward mental health services, because it can bill insurance or Medicaid. And for HIV and AIDS groups that provide medical care, the path forward under health reform is much clearer.
"From our perspective, it absolutely should help us financially," says Don Blanchon, CEO of Whitman-Walker Health, a clinic that specializes in HIV and AIDS. He says about 10 percent of the clinic's patients don't have insurance.
"Right now we're having to raise a lot of money every year to cover the cost of care. So we should get some financial relief because some of those individuals now we can bill for their care."
But, it still means an adjustment. "It kind of is a bit of a culture shock," says Blanchon. He explains that as more people get health insurance, they may have more options for treatment.
"So those folks who now are in that group who are uninsured or underinsured and who come here because they see us as a safety net or they have no other place to go, they now are going to have coverage, and if they don't like the quality of care or the customer service we provide, they'll have coverage and they'll be able to go to some other health center or some other private practice."
D.C. is already further along with health reform than most states. While many, including Virginia, are still arguing over whether or not to expand Medicaid under the Affordable Care Act, the District already did, just months after the law passed in 2010. Now, about 93 percent of residents have health insurance, but that doesn't mean everyone is getting the treatment they need. According to the D.C. health department, just one in four residents diagnosed with HIV gets the necessary treatment and stays on it long enough to keep the virus under control.
Jacob's story was informed by WAMU's Public Insight Network. It's a way for people to share their stories with us and for us to reach out for input on upcoming stories. For more information, click this link.
[Music: "Eternal Future" by Caleb Sampson from Fast Cheap & Out of Control]