By Andy Segedin
March 1, 2016
Leaders at the AIDS Foundation of Chicago (AFC) are continuing the fight against HIV by taking a long look at housing, social justice and co-occurring conditions among patients. The priorities are part of a new three-year strategic plan and eye toward AFC’s future that call for evaluating the needs of older adults and long-term survivors of the virus.
“Now that we have evidence that people are living 25, 30 years [with the virus], issues facing them are unique, not just HIV, but other issues,” said Simone Koehlinger, senior vice president of programs. Koehlinger was quick to add that AFC’s work on objectives such as lowering transmission rates, which currently hover under 1,000 annually in Chicago, still have room for improvement.
More than one-quarter of the clients in AFC’s case management system of 5,000 are older than age 50. A client who might have lived with HIV for 20 years and become proficient in keeping up with medication and medical appointments might not see those skills translate to treating other diseases such as diabetes, Koehlinger said. Facing a second health condition might also produce psychological issues.
Housing, too, has emerged as an emphasis, with needs ranging from rental assistance to assisted living to more support-intensive facilities. In response, case-manager training was adjusted to include specialty tracks that would, for instance, understand resources available to older adults such as housing options. “We are looking at our local resources and creating an inventory,” Koehlinger said.
The annual number of HIV diagnoses in the United States declined by 19 percent from 2005 to 2014, according to a Centers for Disease Control (CDC) surveillance report, from 48,795 in 2005 to 39,718 in 2014. A separate CDC report illustrates that deaths as a result of HIV are also down from a high of 16.2 per 100,000 residents in 1995 to 2.2 in 2013.
Improvements in key metrics have HIV-focused organizations expanding missions to include goals outside of treatment and transmission, including socioeconomic factors, addressing mental and emotional well-being, and making considerations for those aging with the virus. At AFC, addressing such matters includes a dive into advocacy in an effort to increase preventive technologies and ensure that quality treatment is accessible to all, no matter their socioeconomic status.
“As a society, I think that we’re ready for this part of the conversation. A lot of things have been happening at our dinner tables ‘What is equity?’ ‘What is equality?’ ‘What is fair?’ ‘What does poverty have to do with opportunity,’” Koehlinger said. “If we just talk about HIV and AIDS, we are missing a very big part of the picture.”
The Elizabeth Taylor 50-Plus Network, a program within the San Francisco AIDS Foundation, has been dedicated to helping those aging with HIV since it was started in 2013, according to Vincent Crisostomo, program manager. In San Francisco, 58 percent of the 16,000 individuals living with HIV or AIDS are older than age 50 and 84 percent are older than 40. “This population lost most of their friends. They weren’t expecting to be alive at this point and they didn’t plan,” said Crisostomo, who was diagnosed in 1987. “I will need to work for the rest of my life. I’m 54. I didn’t have a retirement savings.”
Some of those on private disability are facing significant shifts in their income once they age out in the coming years, Crisostomo said. As San Francisco becomes increasingly expensive, some patients are moving and commuting two or three hours for assistance every week. The network has advocated with the city to help keep individuals in their homes. Efforts have also been made in linking healthcare providers specializing in treating HIV and AIDS with those proficient in health complications related to aging.
The network is working toward securing peer navigators to help with estate planning, financial planning and organizing documents. Connecting with mental health practitioners has also been identified as a necessity. Discussion groups, retreats and town-hall meetings are used to both engage individuals and identify needs. Crisostomo has taken to integrating older patients into groups such as Positive Force, which traditionally assists those who have been recently infected, as a way of connecting individuals.
The Long Term Coordinating Council of the Human Services Agency of San Francisco has been supportive of the network’s path, Crisostomo said. The network recently received a five-year grant for an undisclosed amount from the Elizabeth Taylor AIDS Foundation to continue its work.
On the opposite end of the age and location spectrum stands Natella Rakhmanina, M.D., of the Children’s National Medical Center and director, technical leadership for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), headquartered in Washington, D.C. Much of the foundation’s work is geared toward preventing the transmission of HIV from mother to child in Sub-Saharan Africa.
Treating children with HIV is accompanied by some unique challenges. Children with HIV tend to have a parent combating the virus, too. The stigma associated with HIV makes difficult the repeat testing necessary for diagnosing children and treatment retention. Medication for children is also behind that of adults, many of whom can be treated with a single pill.
Children, on the other hand, are dependent on a variety of liquids, powders and small tablets.
EGPAF has been and remains committed to prevention efforts, but has expanded its focus more toward caring for children with HIV and tailoring work to help prevent transmissions among adolescents, who might contract the virus through sexual activity. “We are really trying to close the loop,” Rakhmanina said. “It’s kind of futile to save the child in the first few weeks of life and let him die of HIV at age 13.”
A broadening of focus led to a change in messaging to funders. Male partners of women have always been part of EGPAF’s equation and expanded work in treating and preventing transmissions among children and adolescents has changed the foundation’s message to: Even though “pediatric” is in the name, the scope is much wider.
The World Health Organization’s 2015 guidelines focused on treating everyone with the virus will be a “game changer,” according to Rakhmanina, a pediatrician by trade. The challenge will be to ensure that children and adolescents are not lost in the shuffle and remain a priority. “We will stay strong when supporting this,” she said. “We don’t want them to fall out of focus
”Executives at Gay Men’s Health Crisis (GMHC) in New York City have taken a two-pronged approach for adjusting to the shifts in needs among HIV patients. The first was the reinstatement of the Buddy Program that was discontinued in 2006, according to CEO Kelsey Louie.
The return came after a series of focus groups identified a lack of job skills, isolation and cognitive impairment as issues in need of addressing. Originally designed for physically homebound individuals, Louie does not believe that most clients will be in such condition today. They might, however, need the program for emotional help, job-skills training, company during medical visits and to help with mobility issues.
The fundraising approach at GMHC combines both data and impact to generate support for such programming. For instance, in addition to stating that 80,000 hot meals were served to clients, messaging for GMHC will drive home the point that, with those meals, clients were able to live healthier, less isolated lives and are battling with fewer bouts of depression. “Funders want to know that their money is being used and making a difference,” Louie said. “One thing we’ve stressed is that we need to be good stewards of public and private dollars.”
The second prong of the strategy is to become a healthcare provider. In the current model used at GMHC, clients who test positive are immediately taken off-site for a medical appointment and are provided assistance for their emotional needs and in figuring out their insurance. The model has led to 90 percent of GMHC clients becoming virally suppressant, twice the city average and three times the state average, Louie said. “Ninety percent is not 100 percent,” he added. “We think, having our own healthcare, we can get to that 10 percent.”
The plan is to be able to provide a GMHC clinic that would guide the delivery of medical, mental, behavioral and substance-abuse services. Future steps have not yet been determined, Louie said, and a timeframe for establishing the clinic is not yet in place. The ultimate goal will be to have the clinic as part of GMHC headquarters.
Louie intends to continue to listen to clients and follow data toward future strategies. Men of color who have sex with other men as well as transgender individuals statistically are among the hardest hit by HIV. Understanding that finding work is a barrier, GMHC will host a job fair with companies open and willing to hire members of the transgender population.
Providing socially competent care that individuals will feel comfortable utilizing is also a priority. Louie sees HIV patients in coming years receiving supplemental care for other physical conditions as well as homophobia, lack of housing, limited healthcare, substance abuse and mental health needs. “Integrated care is much more effective that disjointed care, the more we bring in-house the better,” he said.
Timothy Ray Brown, known as “The Berlin Patient,” was by broad scientific sentiment cured of HIV in 2008. “Once that took root, there has been a tectonic shift. I gave a speech on a cure seven years ago. I was criticized,” said Kevin Robert Frost, CEO of amfAR, The Foundation for AIDS Research in New York City. “A lot of people said it was irresponsible. Cure was a four-letter word…Now, quite the opposite is true. I think that you’ll find consensus that we’ll find a cure.”
Focuses at amfAR have been narrowed in recent years toward leading efforts to find a cure. Brown’s story has served as an inspiration. With many patients able to live long lives by taking a pill, Frost questions how much further treatments can advance. That leaves pursuits for a vaccine and a cure for HIV as the next steps. Of the two, a cure is further along from a scientific perspective despite more modest funding, according to Frost.
Frost described the past 30 years of HIV and AIDS research as a reductive process geared toward understanding the virus, its impact on the immune system and how people are infected. The nature of research has shifted from one of understanding to one of addressing. Choosing research to fund, too, has evolved. At one point, scientists would present their ideas and the best ones were selected and funded; amfAR has now defined a goal, curing HIV, and asked for scientists to respond to it.
The manner in which amfAR communicates with its donors is similarly unique. Donors tend to have an investor’s mentality, Frost said, and see their support of amfAR as both an investment and philanthropy. “Our fundraising messages tend not to be the feel-good humanistic messages you see from a lot of organizations, but rather we focus on the idea of investing. You’ll see the world ‘investing’ a lot when we talk to donors because we are talking about making an investment in research and a belief in the power of research.”
The message has worked in recent years. Fundraising at amfAR hit a snag in 2009, when $28 million was projected, but only $22 million was raised. Since then, funding has increased every year, reaching $52 million in 2015. Frost said he is optimistic that, a few years down the road, there will be more than a single concept case and that a dozen or two dozen individuals will be cured. “We’re going to be trying to figure out the science around that,” he said. “Can we figure out how to replicate it in a sustainable way?” NPT