TRACYTON — It took 15 years, but Mary Jones finally fulfilled her promise.
The 68-year-old Tracyton woman has spent 30 years fostering babies born to alcohol and drug-addicted mothers. Most of those babies were suffering from the effects of withdrawal since birth.
In 2003, Jones received a phone call from a social worker who told her that one little girl she was fostering might have HIV. Jones had been caring for the baby for several months, but no one from the state had alerted her that the child could be at risk for the virus.
While the test came back negative, the scare propelled Jones to advocate for early HIV-testing for at-risk infants. She promised to do better.
“I mean I literally promised in (the baby's) ear, I said: ‘I will be your voice, and I'm going to do everything I can to correct this wrong’,” Jones said.
On Wednesday, she made good on her word when Gov. Jay Inslee signed a bill repealing a pair of laws that governed consent for HIV testing — meaning healthcare providers and the state no longer need the consent of a guardian before testing a baby for HIV.
It marked the end of more than a decade of advocacy for Jones.
“Last night I was up most of the night just lying there, thinking “Oh my gosh, I feel like a different person today, like I’m reborn or something,” Jones said.
Removing barriers to HIV testing
It’s been a long road for Jones, who worked with Sen. Christine Rolfes, D-Bainbridge Island, to get the legislation passed. The pair succeeded in passing a bill in 2016 that required doctors to routinely screen all patients ages 15 through 65 and pregnant women for HIV.
Since 2006, Jones has been an important proponent of at least six other pieces of legislation. Most didn’t pass. Overwhelmed by trying to care for foster children and lobby in Olympia at the same time, Jones shut down her foster license in 2013 and turned to advocacy full time.
"Mary was ahead of her time, really, and it took the medical field, the public health field, some time to catch up to her,” Rolfes said.
For years, state law required the mother’s consent or a court order to test a baby for HIV. Because testing a newborn would reveal the mother’s HIV status, many elected not to have their children tested.
“The issue was we got stuck in this no man's land of the babies could be treated if they tested positive, but it was difficult to get them tested because it would be violating the mother's privacy,” Rolfes said.
Jones believes a shift in the stigma surrounding HIV and improved treatment options helped promote the changes. Laws requiring “exceptional” consent for HIV testing were first passed in the 1980s and based largely on protecting privacy.
“People were being tested without their consent, their test results were sometimes being shared with people without their consent and then they were being discriminated against," said Tamara Jones, Policy and Systems Coordinator with the End AIDS Washington initiative.
The new law will allow health care providers who suspect a mother may have HIV to test her baby for the disease without consent. But there are measures in place — like HIPAA, which was passed in 1996, and state anti-discrimination laws — to protect individual medical records and people with HIV from discrimination.
Early testing is important not only for the safety of foster parents but to reduce the transmission of HIV from mother to child. Chances of babies contracting the virus are reduced greatly if they get proper medication between six and 12 hours after birth, according to the U.S. Department of Health and Human Services.
Health officials say the changes could also encourage more adults to get tested. HIV was the only disease in the state that required an extra level of consent above the standard care. Now, getting screening for HIV will be like any other medical test.
“Our hope is that medical systems will see this as removing a barrier to screenings and that they will offer more screenings,” Claudia Catastini, director of the state Department of Health’s Office of Infectious Disease, said.
The bill also works to the benefit of the state’s End AIDS initiative, a working group created in 2014 with the goal of reducing the rate of new AIDS cases by 50 percent by 2020.
A state planning group is putting together a package of legislation it hopes to have ready by next year’s session, according to Tamara Jones with the End AIDS initiative. Its goal is to update Washington’s HIV laws to account for current science and to help reduce stigma.
The bill that passed Wednesday was just a first step.
“I think it’ll save lives,” Rolfes said.
Life after advocacy
Jones remembers a story about every one of her foster babies.
Her home is adorned with photos and mementos, small trinkets that conjure up memories of each individual child and the often-horrifying circumstances she encountered them under.
Jones estimates she took in between 40 to 60 babies over 30 years as a foster parent, feeding them, changing them and medicating them for anywhere from a few days to up to several years.
“My babies will always be my life, they just made me who I am,” Jones said.
Just as prevalent are reminders of her time spent in Olympia — stacks of legislative reports, letters and bills are strewn around her upstairs office.
Stories from both parts of Jones’ life eventually evolved into a book, which she published in 2014. A second volume is in the works, but until last week, it didn’t have an ending. The signing of the law will be her last chapter.
The law was supposed to be a moment of victory for Jones, but she said she mostly felt tired. After the bill was signed, she drove home and crawled into bed.
“I couldn't get a handle on what had just happened,” Jones said. “Just that signature, so fast, and a handshake, and it's done, it's really hard to wrap your head around.”
Once the final chapters are finished, her plan is to take a break from everything for a little while. Eventually, Jones wants to go to Europe with family to work on a new book.
And while she says she feels a sense of closure, Jones still wishes she could talk to that little girl again, to tell her she kept her promise.
“Everybody I've talked to over these years, my mouth was moving, but they were hearing her voice,” Jones said. “Because I told her you don't have a voice, and I’m going to do whatever I can to correct a wrong. In my mind, in a way, everything I said was her voice.”