Esther Lucero, a nationally known health advocate for urban Indians, got her start as an HIV case manager in San Francisco in the late 1980s. That was when she became aware of Native Americans and Alaska Natives in the city who were struggling with HIV/AIDS.
Others dismissed their numbers as so small as to be insignificant. The word “insignificant” did not sit well with Lucero, who is part Navajo, part Latina. So she and one other Native American named Gayle Burns, whom Lucero described as “a tiny Muskogee woman who cursed like a sailor,” went to an HIV advocacy meeting where they found themselves at a table with a group of puzzled gay white men.
“They asked, ‘Why are you here?’” recalled Lucero, today the CEO of the Seattle Indian Health Board and the Urban Indian Health Institute. “And Gayle said, ‘Because we’re watching our children die. We’re responsible for their lives. It doesn’t end with giving birth.’
“And then she told them what they could do with their ‘insignificance.’”
On a day now officially designated as National Native HIV/AIDS Awareness Day, Lucero spoke at an HIV seminar organized by her institute and the community advisory board of defeatHIV, an HIV cure research group based at Fred Hutchinson Cancer Research Center.
She told the group of about 50 Native Americans in attendance, “We’re here to champion the effort to never be insignificant again. We’re here to be part of the team.”
American Indians/Alaska Natives rank fifth nationwide in rates of HIV diagnoses, a lower rate than African Americans and Latinos but higher than Asians and whites, said Leah Dodge, an epidemiologist with the Urban Indian Health Institute and a member of the Little River Band of Ottawa Indians. (The Urban Indian Health Institute, which is a division of the Seattle Indian Health Board, is one of 12 tribal epidemiological centers funded by the Indian Health Service; it is the largest and the only one that is national in scope.)
In other measures, American Indians/Alaska Natives fare worse than other groups. Almost 1 in 5 — 19 percent — of Native Americans living with HIV are unaware that they are infected, said Dodge, compared with 13 percent of all people with HIV. Knowing that you are infected is critical because, since 1996, life-saving antiretroviral drugs have turned HIV from an almost certain death sentence to a mostly manageable chronic disease. Research has shown that the sooner after infection someone with HIV goes on treatment, the better the outcome. Also, people who are able to suppress the virus through therapy are much less likely to transmit it to others.
But once Native Americans are diagnosed with HIV, just a little over half — 53 percent — remain under medical care and on treatment, compared with 58 percent of whites (a disappointingly low figure itself). And of all groups in the U.S., Dodge said, American Indians/Alaska Natives have the lowest HIV/AIDS survival rates.
Figuring out how to do effective outreach can be challenging for health advocates given cultural and language diversity among more than 560 federally recognized tribes, said Dodge. Other barriers she described, such as poverty, lack of access to healthcare and mistrust of care providers, are common among many vulnerable populations in the U.S. And Native Americans share with all groups a dwindling awareness of HIV, particularly since the advent of modern treatments drove AIDS deaths down but also drove HIV out of the headlines.
American Indians/Alaska Natives share one additional barrier with all those infected with HIV: the stigma that still surrounds the virus, even today.
Bill Hall knows about the stigma firsthand. A Tlingit from Southeast Alaska, he tested positive in 1986, he told the group on Monday and has been living with HIV for more than 30 years.
“There’s great stigma attached to HIV in this community and in others,” he said. “It’s the biggest obstacle to effectively battling this disease.”
Hall described knowing fellow Natives who, when they learned they were positive, were so ashamed and so afraid that their families and communities would find out that they avoided seeing doctors or taking the antiretroviral drugs that would have saved them. They all died, he said.
“The feeling of having no one to turn to is indescribable,” he said. “Our silence inadvertently tells them that their lives do not matter.”
Hall has spoken openly and movingly of his own struggles with depression and the despair he felt when he was diagnosed with HIV.
He has also described the hope that returned after many years when he met others who spoke openly of having HIV/AIDS and when he joined the defeatHIV community advisory board.
Given that treatment can extend the lifespan of people with HIV to near normal, Michael Louella, the defeatHIV community advisory board coordinator, fields this question often: Why do we need a cure?
He has an answer ready.
“Only people who live without HIV in their bodies ask that question,” he said. “There’s a disparity of access to care: Only about half of those with HIV have access to medication that keep them alive. Even if they have access to medicine, there’s the burden of taking pills every day for the rest of your life. Not everyone is good at remembering. Also, there are strains on the liver and kidney of taking pills every day.” People with HIV also have a higher incidence of cancer.
There is also the expense of taking life-long medication.
“Depending on how a cure is priced and subsidized, it could be more cost-effective to cure people than to treat them for life,” Louella said.
More than 70 million people worldwide have been infected with HIV since the first cases were reported in 1981. Roughly half of them died. Just one has been cured.
Louella told the group about the Seattle-born Timothy Ray Brown, who while living in Berlin had undergone two grueling bone marrow transplants to treat acute myeloid leukemia. In what proved to be a successful attempt to also cure Brown’s HIV infection, his Berlin doctor found a stem cell donor who carried two copies of a rare gene mutation that confers natural resistance to the virus. Brown stopped taking antiretroviral drugs after the first transplant in 2007 and today shows no sign of HIV.
Such a harsh — and expensive — treatment is only appropriate for someone who faces a life-threatening cancer in addition to HIV, said Louella. He and Smitty Buckler, another advisory board member and an unenrolled member of the Choctaw tribe, gave an update on HIV cure research underway at Fred Hutch.
In its first five years, defeatHIV used Brown’s cure as a blueprint for researching a less toxic therapy by seeking to genetically engineer resistance in an infected person’s own immune cells. In preclinical experiments, Fred Hutch’s Dr. Hans-Peter Kiem’s lab has successfully modified blood stem cells using a gene editing technique and returned the resistant stem cells to repopulate the immune system. Research into this approach is continuing.
In 2016, defeatHIV received a second five-year round of federal funding to explore using immunotherapies against HIV. This approach — which looks for ways to harness the body’s own immune system to fight a disease — is generating great excitement in cancer research.
“Drs. Keith Jerome and Hans-Peter Kiem have assembled a powerful team of scientists at the forefront of HIV, bone marrow stem cell transplants and cell and gene therapy,” said Louella, “Our goal is to develop innovative ways to cure HIV.”
Hall also had message for those attending.
“For efforts like ours to succeed,” he said, “it’s going to take every community affected by HIV/AIDS to become involved in the search for a cure.”
Earlier this year, the Seattle Indian Health Board gave Hall its Adeline Garcia Community Services Award for his leadership in HIV outreach to Native communities. Garcia, who died in 2004, was a longtime president of the Seattle Indian Health Board and an activist for urban Indians.
“Bill is so vital for our community advisory board that it would be impossible for me to envision our group fulfilling its mission … without his constant and dedicated involvement,” said Louella.
Monday’s HIV seminar concluded with an announcement that the Urban Indian Health Institute was initiating a national survey on Native Americans/Alaska Natives and HIV. (If you would like to complete the survey, email email@example.com.)
When Louella posted notices on the defeatHIV Facebook page and around town about Monday’s presentations, both he and Hall were surprised — and pleased — at the positive response.
“There’s a hunger out there to learn more about this,” Hall said. “It is time, long overdue, for us to step up and show Native Americans with HIV the way home. As Natives, it’s what we do.”
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Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.